Endo Story – Devon

When we share our stories, we empower and encourage other women. The pain is not all in your head, it is real. Endometriosis is real and you are not alone.

Devon is an endo warrior who lives in Yorkshire, UK. She was 25 years old when she was diagnosed with Endometriosis, now a year later she tells her story. This story is a reblog from Bloomin’ Uterus.

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Devon’s Journey:   Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologize for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.

So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right-hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first, I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have a 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was, in fact, bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.

That is why I don’t know if my journey started 2 years ago or 12.

2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favorite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.

This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.

At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!

A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.

From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.

Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following its removal, I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain.  In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.

To this date, I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopies should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently, I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.

Most of all, I am educating myself.

Throughout my journey, it has felt like The Blind Leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!

Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.

If you would like to e-mail Devon, you can do so here and you can follow her blog.

Thank you for sharing your story Devon, I could relate with many parts. I pray that the docs find a cure, Lord knows, millions of women need it. Grace, peace, and strength unto you.

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What To Pack in Your Hospital Bag Before Surgery

I went for my first surgery dressed in jeans. It was a day surgery, needless to say, that was a horrible idea. Dressing up afterward was not easy, my bladder was sore and my urethra was upset that a catheter had gone visiting, yet there I was trying to keep up with fashion and fit into a snug pair of jeans while anesthesia coursed through my veins. For another one of my surgeries, I wore a loose dress but I over packed and looked like I would be staying at the hospital for several weeks.

Five surgeries later, I have narrowed the contents of my bag down to necessities and comfort. Before I pack it, I ask myself is it necessary? Will it make me feel more comfortable?

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Here are a few items that make it into my bag:

For the hospital stay

  • Surgery documents, pre-authorization forms if you need them
  • A packet of pads or panty liners in case you bleed post-op
  • Toiletries (toothpaste, toothbrush, flannel, shower gel/soap, lip balm, lotion, comb/brush )
  • Wet wipes to freshen up
  • Low waist or high rising underwear ( granny panties) that don’t touch the incision scars, and are easy to wear and remove
  • Comfortable bra preferably without an underwire
  • Shoes that are easy to slip on like sandals so you don’t have to bend
  • Entertainment: colors and coloring book, a book to read, music/ podcasts to listen to
  • Sweater and socks if you feel cold
  • A blankie / Maasai blanket
  • Phone and charger
  • A notebook – note down any questions you have that you want to ask the doctor before the surgery and any questions you want to ask during your post operation review. Also, you can write down the side effects of drugs to look out for when you go home.
  • Snacks – if you carry any, make sure that they do not cause bloating

For the journey home

  • Comfortable clothes to leave the hospital – yoga pants or a maxi dress
  • A pillow
  • Something to fold and put between you and the safety belt.

Confirm what your hospital gives you so that you decide if you need to add items onto this list.

As you plan for the surgery, I pray that you will experience God’s peace and that His joy will be your strength. May you know that He is right there with you through it all.

Deuteronomy 31:8 New International Version (NIV)

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Is there something that you packed and was a lifesaver, that you’d like to share with other endo warriors? Please leave a comment below.

 

 

When Healing Was An Idol

I idolized healing.

It was the destination, my checkbox before I could be happy, better yet, live my life. It was the proverbial ‘GO’ in Monopoly that I needed to pass before I could get $200. It was exactly what I lived for. What I craved. What I needed.

Then it didn’t happen.

Needless to say, I was crushed. Life came to a standstill, but it’s not exactly like it was moving, remember it was standing still because I was waiting for a miracle. As I stood, the clock kept ticking and tocking, and time, precious time, kept going. My dreams, those that were time sensitive, well they just fizzled out, others became forgotten and life went as it may.

#Mybestlifenow was not a hashtag I would have used, #survivor #barelysurviving were more apt for any post that I would make. Nothing was happening, well a lot was happening, I was sinking into a hole, frustrated that I was not moving forward.

It was a hard place to be.

One day I saw the light, I realized that healing may not be a destination. I took control of what I could control and started making small steps, taking responsibility for my happiness.

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God has brought me a long way, and I am not where I used to be. Now I am making the most of what I have in my hands. I may not choose my cards, but I can choose to have joy. As I have obeyed, the healing has come. This time it is not the focus, it is not an idol.

Here’s to choosing joy, remaining obedient, shining your light, keeping hope alive and keeping God at His rightful place.

A Conversation About Menstruation – MHDay2018

When we take away the shame that surrounds menstruation, girls and women will truly be able to walk in freedom.

Being born with a uterus should not be a disadvantage. Being born with a uterus should not stagnate your dreams. Being born with a uterus should not make you spend time away from school or work every month.

To commemorate Menstrual Hygiene day 2018, We For She organized an event at Ronald Ngala Primary School in Mombasa.

It was nice to see boys and girls eager to learn more about menstrual hygiene. A conversation about menstruation is one that we need to have with people of both genders. Menstruation is not optional, menstrual hygiene and health education should be prioritized.

I was invited to speak about menstrual health education and endometriosis. It was good to create awareness about endometriosis even to preteens. I urged the stakeholders present to offer comprehensive menstrual health education to the girls, including stressing the importance of understanding your hormonal functions and how to decipher your periods.

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The Mombasa County Women Representative Hon Asha Mohamed took the microphone and shared her journey with Endometriosis. Her vulnerability and willingness to share her journey was beautiful. We may be one in ten women, but we are more than just a statistic. We are mothers, sisters, wives, cousins, and friends to many other men and women. Our voices matter.

I applaud you Hon Asha Mohamed. Thank you for standing with us and for amplifying our voice.

Tina Leslie of Freeedom4girls shared about period poverty. The reusable menstrual products are a great alternative for girls and women who miss school and work because of lack of sanitary products. Also, these products are environmentally friendly.

The theme of this year’s Menstrual Hygiene days was #NoMoreLimits. Here’s to girls and women achieving their dreams and living their lives to the fullest.

 

 

Let’s Talk About Periods

I had a beautiful period last month.

It was a nice shade of red, bright, alive, a good summary that my hormone levels are getting better. It was a shade that I never saw in my teenage years. It made me happy, reminded me of how jolly my little one gets when she sees Elmo. Speaking of Sesame Street, a friend told me that she calls her period ‘Elmo’ and that my friends, is how I have closed the Furchester hotel in my mind.

It flowed like a stream, which is a relief since my period has always felt like the ocean on a bad day, like trying to kayak on choppy waters in a raging storm. I told hubby how good it looked, let’s just say that was not what he was expecting me to say. I have talked about periods for a long time, but this was a different narrative.

I love talking about periods. It is one of the topics I could give a talk on without prior preparation. Talking about periods is important. If I knew that my period should be bright red and runny as a teenage girl, I would probably have gone to a hospital sooner. Instead, I suffered in shame. I was horrified by the size of the clots, and the dark purple color was really nothing to write home about.

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We need to talk about periods openly and regularly. Too many girls and women are suffering in silence. So many dreams are unrealized because of menstrual health-related conditions and lack of supplies.

Monday 28th May is MH day 2018, the theme this year is #NoMoreLimits. If you are in Mombasa and you would like to meet up and have a conversation about menstrual health, please drop me a line via yellowendoflower@gmail.com

Please speak up, share your story, initiate a menstrual health and hygiene conversation with women and girls around you. Let them know that being born with a uterus should not be a disadvantage. We can all achieve our dreams.

#NoMoreLimits

Endometriosis and Mental Health

One of the areas that Endometriosis affects women in a great way is in mental health. Endo warriors fight many psychological battles. These have to do with living with chronic pain and reduced effectiveness, infertility, miscarriages, missed opportunities especially career wise, relationship issues sometimes leading to divorce, body image concerns such as weight gain or scarring from numerous surgeries, mood problems caused by hormones gone berserk or by some of the treatments we get to manage the condition. The list is endless.

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Endo Warriors find that these issues sometimes leave them in a dilemma regarding their identity. Wondering “who am I?” A mum in waiting? The sickly one? The divorcee? The fat one?

Generally, people tend to answer the identity question – who am I – with roles we play such as: I am a wife/ mother of two/ nurse/ divorcee/ the clown in the family. But is that really who we are? The problem with these descriptions is that they are all determined externally and could change any moment. The wife can become widowed or divorced, while the divorcee can get remarried. This is bound to create an identity crisis every time there is a change. Secondly, these roles come with society’s perception and expectation of how they should be played. This can also create disillusionment when we try to do things differently from the norm and the society rejects it. For example, in many of our African societies remarriage of a woman is still frowned upon even following the death of her husband.

So, what if we looked at our identity from a more intrinsic perspective? That instead of waiting for society to tell us who we are, we look inward and see what we are made of – those things that we have control over. Identify ourselves by such things as our values, our thoughts and beliefs, our likes and dislikes. For example, even though the society may mount undue pressure on an Endo Warrior married for a number of years but still trusting God for her miracle baby, she can still walk with her head held up high telling herself that her value as a person is not dependent on being a biological parent.

To achieve this level of self-awareness and confidence, our beliefs play a big role. Our thoughts and beliefs are the lenses through which we interpret the world They affect how we feel and act. Negative thought patterns will certainly make us feel sad, depressed, frustrated, overwhelmed and are likely to make us act irrationally. Some Endo Warriors end up giving in to negative thought patterns and end up feeling overwhelmed while others in the same boat rise above the struggles and end up excelling in their spaces of influence.

One healthy habit that Endo Warriors need to cultivate is guarding their thoughts. This needs to be a daily intentional action. Eventually this forms a habit and it becomes more natural to think rationally. Some of the ways to achieve this is through:

  1. Scheduling some down time – Incorporate quiet time as part of daily routine. Even better if this period includes spiritual nourishment like some uplifting worship music.
  2. Differentiate between what you have control over and what you do not – change whatever needs to be changed and quit worrying about what is not in your power to do so.
  3. Be kind to yourself – Acknowledge the struggles and respect the limitations that come with endo. Remember you never wished this on yourself – you just happen to be one of 176 million strong soldiers worldwide on this assignment.
  4. Self-Awareness – Begin to be aware of when your thoughts start to spiral down the abyss, then stop them. One trick of stopping these thought is to have a rubber band around the wrist. Each time you find yourself thinking negative thoughts, snap the rubber band and the slight pain usually jolts one to the present moment and away from the unhelpful thoughts. Try it!

Faith Osiro first shared this with Endo warriors at the March 2018 Endometriosisis Foundation of Kenya Endomarch event. She is a counsellor based in Nairobi. If you would like to get in touch with her, please reach her on 0737 861671.

The Endo Blues ~ Battling With Depression

I thought I was losing my mind. Instead of feeling better after the laparoscopic surgery I was feeling worse. Granted there was no pain in my abdomen, but I felt like a sedated prisoner in my own body. I desperately wanted to fight, but I was often too tired or sleepy and disinterested.

Getting out of bed was difficult, leaving the house felt impossible. I remember I would cut two pieces of paper, write ‘Yes’ on one of them and ‘No’ on the other and then pick one with my eyes closed. As I picked, I prayed that I would pick a ‘No’ so that I wouldn’t have to leave the house. Sometimes the voice inside overrode the ‘Yes’ I had picked and I would stay at home.

I was depressed, and I had no idea.

The hormonal treatment to treat Endo combined with Endo had hurled me into a dark corner, burdened my shoulders and I was forced to surrender. There was no happiness. There was no joy. Laughter was a mystery. I dragged my feet as I walked, and wondered why the nights were so short. I slept but never felt energized, and desperately wished that this aspect could manifest itself physically.

My doctor was only looking out for the physical implications of the disease. Not once did he ever ask how I was doing, psychologically and emotionally. Perhaps it wasn’t his place, but he could have brought someone to the table to shed some light on that aspect.

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I was nineteen and lost at the big blue sea. I was drowning on dry land. I was fighting phsycially and paddling to stay alive. I hated it. I cried bitter tears, if we wrung my pillow we’d fill a bucket or two.

I felt alone.

I was told to pray, and I prayed. The blues, well, they remained, the dark shades made way for the lighter hues. And as time went by, I begun to see the sun in my sky. I begun to feel the warmth of it’s rays on my skin. I knew that I would be okay.

My heart goes out to Endo warriors who are grappling with this darkness. You are not alone. You do not have to walk alone. If you would like to talk to a professional please call Faith on 0737861671. She has graciously agreed to help Endo warriors navigate these choppy waters at a discounted rate.

You can reach me via yellowendoflower@gmail.com

You are not alone.

 

Hemorrhoids. Be. Gone – 8 Home Remedies for Hemorrhoids

Hemorrhoids. The pain in the butt that no one ever wants to have.

Courtesy of Endo, I was acquainted with hemorrhoids at a tender age. I didn’t know what it was, but it seemed like the lesser evil compared to being backed up, thanks to chronic constipation. The bowel issues began before I was 10, and by the time I started my periods, Things Were Bad! During my periods, I would battle, cramps, heavy flow, and bleeding hemorrhoids. Just thinking about the pain gives me chills. Some months I wasn’t quite sure where the bleeding was coming from. It was a messy affair.

Over the years, things have gotten better. Here are some home remedies that I have tried and have worked:

1. Hydrate

Drink enough water, at least 6-8 glasses of water a day. The liquid will help to soften the stool.

2. Eat more fiber

Eat fiber-rich foods such as fruits, whole grains, and vegetables. The fiber will help to soften the stool. Reduce the intake of foods that trigger and worsen constipation.

3. Don’t push too hard

Avoid bearing down excessively when passing stool. It may put too much pressure on your veins.

4. Don’t postpone the urge to go

When you feel like using the bathroom, use the bathroom. The longer you wait, the stool will become dehydrated.

5. Don’t sit too long

Avoid spending to much time perched on the toilet seat. Reading on the toilet may cause more harm than good by straining your veins.

6. Keep the anus clean and dry

Avoid using things that can irritate the skin such as soap and wipes with alcohol. Wash the anus with water and pat dry. Wear loose, breathable materials.

7. Get moving

Adapt exercise into your lifestyle, it can help to ease the pressure on the veins. Also, losing excessive weight may take some pressure off the veins.

8. Use a step stool

Place a step stool infront of the toilet and step on it as you sit. Elevating your legs into a squat like position may help you pass stool with some ease.

There are topical creams available over-the-counter. However, if the pain, discomfort, and bleeding persists, please see a doctor.

Here’s to hemorrhoid and constipation free days.

 

 

 

31 Days of Endo ~ Lyndsay

Day 23 🙂

I am catching up slowly! I hope you’ve had a great Endo awareness month so far.

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Today we highlight Lyndsay’s story as she shares her journey with Thoracic Endometriosis. Lyndsay shared her story with Lisa on Bloomin’ Uterus in January this year.

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Lyndsay was 32 years old when she was diagnosed with Endometriosis.  Now 37, she lives in Pittsburgh, Pennsylvania, with her beautiful family and wants to share her Endo Journey with us.  Lyndsay is one of the rare EndoSisters whose lungs are affected by the disease!

Lyndsay’s Journey: I always had painful periods as a teenager, and into my twenties. I didn’t really think anything of it at the time.

At age 26, I was in a car accident where I was the passenger. The SUV rolled a few times as the driver had swerved to avoid a deer. We climbed out of the windshield, appearing unharmed. Paramedics checked us out and said we looked fine. I followed up with my doctor since I still felt off a day later, but she also said I seemed fine.

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It was a little over a year later, I was working out at the gym and had a strange stomach pain. It got worse as the night went on, and I ended up in the hospital. I waited for almost 8 hours before I saw someone in the ER (my vitals were normal, so I was not deemed to be a priority). When they finally were able to check me out, they did an X-ray to see what could be causing my issues. It turned out my diaphragm had ripped open, and my organs had pushed up into my chest cavity, and partially collapsed my right lung. They asked if I had been kicked by a horse (I hadn’t) or if I’d been in a car accident. I told them I had over a year ago.

My issue puzzled the ER, and they sent me into surgery with 3 different surgeons – a general surgeon, a thoracic surgeon, and an ob/gyn. My surgery took over 8 hours and we learned a lot.

  1. It appeared that my liver had a strange ring around it and they said it was likely that during the car accident, the liver was pushed up through my diaphragm and remained wedged in there for over a year. (Note that during that year, my periods were more painful than I’d ever experienced);
  2. The car accident had left one of my Fallopian tubes crushed;
  3. I had endometriosis in my uterus / abdomen;
  4. The liver being shoved into my chest also damaged my right lung leaving it 10% collapsed for over a year.

I came out of surgery with a chest tube on the right side. After a few days in the hospital, they removed my chest tube and sent me home. My chest filled up with blood after I was sent home, and I had a series of visits where they would drain liters of bloody liquid from my chest.

Eventually, I had another surgery on the right side and a chest tube put in to clear up the issue. I spent weeks in the hospital and eventually, they sent me home with a portable chest tube device (it has some German name that I can’t recall). The home health nurse that came to check in on my lung issue/chest tube device wasn’t properly cleaning her tools she used to remove the fluid from the device, and after a week at home, I ended up with a pretty serious infection along the chest tube site.  I was hospitalized again, and after a few more weeks of treatment, and gradually removing the chest tube, I had stabilized.

Fast forward 2 years. In this time, I got married and was pregnant with my first baby. The pregnancy seemed to be going well until I hit about 20-22 weeks. I was gaining weight normally, growing the way I should be growing, etc until about week 22. I started to plateau. I also had a nasty cough and started to lose weight. I consulted my ob/gyn (I switched to the practice that was involved in my surgery since I thought they knew the most about my medical history). When I voiced concerns about my weight loss, I was told by one of the female docs in the practice that “you are the type of person who doesn’t like to gain weight”…. I told her she was wrong and I was trying to eat the best food for the baby and at this point was drinking ensure to gain weight. She dismissed my concerns.

Things got worse as my pregnancy went on. I lost more and more weight, got short of breath very easily, and after almost going into labor early, was placed on bed rest for a few weeks until I demanded to be seen to check in the baby (the practice was very dismissive of my concerns – at this point, I was puking, had diarrhea, and looked very emaciated). I demanded to have an ultrasound to be sure the baby was okay. I went into the office and was immediately shipped off to labor and delivery to have my baby. Once I was dilated 9-10cm, pushing out the baby wasn’t so bad. I had a horrible cough, but actually, my coughing/gagging helped my body to push my son out of my body. He was born in about an hour and was a 5lb 2oz healthy baby boy and I was so happy.

I felt off physically after I gave birth, but was assured that it was normal to feel that way. I would talk and lose my breath for like a full minute. After persistently asking to have someone help me with my cough/ breathing issue, (they tried to send me home telling me I was fine), a doctor in another department saw my history, knew I’d had collapsed lungs before, and ordered a CT scan. So after my 3 wonderful days with my baby, I was told my lung had fully collapsed on the right side and that I’d need to go into surgery to repair it. I was devastated that I wouldn’t get to spend every minute with my new baby but knew I had to fix my lung. I had the lung repaired, had 2 chest tubes, and was in the hospital a little over a week.

Going home was such a great feeling so that I could reunite with my newborn. The cause of the lung collapse was still unknown at this point, but the guess was something related to the childbirth had irritated it. They estimated that if I got pregnant again, there would only be a 15% chance this would happen again.

Fast forward 2.5 years, I was on vacation and it happened to be a period week. I took Seasonique at the time which allowed for only 4 periods a year which I requested due to how painful they were. I was coughing and I coughed up blood. I started googling “coughing up blood on your period” and for the first time saw an article about how some people had endometriosis in their chest cavities and could cough up blood during their period.

I called my thoracic surgeon to tell this to him. We discussed options for a bit and his suggestion was basically, “if you want another baby, I’d try to get pregnant soon and then I’d get on a birth control pill and not ever take the blanks, but also consult with an ob/gyn”.

A few months later (thankfully) I got pregnant, and actually made it through most of this pregnancy without issue, however, I also went into labor early with this one and gave birth to a baby girl. I did dilate up to 9cm and while they were getting ready to deliver, they noticed she was breech, and I had to be quickly sent into surgery to do a c-section to deliver her. During surgery, my ob/gyn noticed a lot of strange weblike tissue in my abdomen. He cut it all out for me, and sent some to be biopsied. It wasn’t determined to have some endometrial implants on it. My daughter was healthy, but tiny. She was 4lbs 15oz, and while we were all sent home from the hospital together, when she went in for her first doctor visit the next morning, her body temp was too low and she had to be admitted to children’s. My husband took her since I was recovering from my c-section and the same night, I ended up in the ER with chest pain. It turned out both sides of my chest filled up with blood.

My surgeon surmised that if I did have endometriosis in my chest cavity (he thought it traveled there after my car accident), that the surge of hormones during delivery most likely caused the crazy bleeding. He suggested a lot of walking (20 min 3 times a day) could help keep my lungs expanded and push out the fluid. After a few weeks of that, my lungs were back to normal. My daughter also was out of the hospital after 5 days. She just had to gain some weight to be able to hold her body temperature. She and I were both home recovering together.

About 7 months later, I had some severe stomach pains and ended up in the ER. They diagnosed me with stomach ulcers. After a few weeks on antacids, I ended up back in the hospital with a collapsed right lung. After 2 failed pigtail catheter attempts, I ended up with 2 collapsed lungs. I had the pleurodesis done on the right and had 2 chest tubes placed on that side and 1 on the left. The pleurodesis is a procedure which irritates the chest wall to make it sticky so that the lung will adhere to the chest wall and not be able to collapse. The left side healed quickly (relatively) but the right side did not. Pleurodesis didn’t work evenly. Another chest tube placement was tried to get the doxycycline into different areas on the chest wall to try to get the lung to stick. It stuck in a strange web-like formation leaving a few pockets of space. One pocket was a part of the lung that still had an air leak.

I was in and out of the hospital over a 6 month period including a 6-week hospital stay and an 8-week hospital stay. I went home for a few weeks with a chest tube unit (the large one that wouldn’t allow for infection). Finally, they decided to remove the chest tube even though leak remained. The lung was stable even though the hole was still there. I was stable with the web-like right lung for 3 years.

Fast forward to daylight savings time one year … I had been taking birth control pills without the blanks for a few years without issue. I forgot this year to adjust the time I take my pill. I have an alarm on my phone that goes off at 9pm every day. Well a few weeks later, my lung collapsed. It happened just after Thanksgiving. My doctor allowed me to wait out the holidays with my family and come in January to get a chest tube. I was thankful to spend Christmas at home since I had missed Christmas the year my daughter was born. He tried just the small pigtail catheter in January. It worked temporarily, but I had another collapse in March and opted to do the pleurodesis on the left side. It seemed to work and expected to be the more permanent solution.

I made it until October before having another issue. It seemed as though the very bottom of the lung had come “unglued”. After this repair, I went to consult with Cleveland Clinic in their Pulmonary Medicine Department and also talked to the Head of Thoracic Surgery. They both said that they had nothing new to offer, but confirmed the steps my doctors had taken were what they would have thought to do. In their 20 years at the Hospital, they had only seen 1 other case similar to mine. They explained to me that I most likely had microscopic endometrial implants in my chest cavity. The implants bubble up during a period and then the bubbles pop when the hormone is no longer present. They suggested consulting more with an ob/gyn but also said that once I hit menopause the issue would go away.

Today I am writing this while in the Hospital less than a month from that conversation in Cleveland. My insurance changed my birth control brand to a generic. It had the same active ingredients, so I thought it would be okay. I had break through bleeding, and a week later the left lung collapsed. I had pigtail catheter chest tube installed on the left to suck out the air and allow the hole to heal. I am having my doctor write a prescription that requires me to remain on my current brand of birth control to prevent this from happening. It was encouraging to hear everyone’s stories, and if you can actually make it all the way through my crazy saga, I hope it’s helpful.

Words of Advice:  If you are treating a lung endo issue with birth control, be careful about switching brands and remember to adjust for daylight savings time. Be strong and hang in there. It helps to take it just 1 day at a time and remember every day out of the hospital is a good one.

The Last Word: It’s comforting in a way to know that others have the same issue as me. Every time I tell my story to people, they look so horrified and have never heard of lungs collapsing due to endometriosis. I am happy to have a community of others with crazy endo issues.

If you wish to contact Lyndsay, you can email her here.

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Thank you for sharing your story, Lyndsay. We are praying that a cure for Endo is found soon. May God’s grace and strength be sufficient for you as you battle endo and balance being a mum and wife. Here’s to happy, pain-free days ahead.

31 Days Of Endo ~ Unsilenced

Day 22

Individual’s stories are like dominoes, they look small, but they have the power to start a revolution and change the status quo.

Two years ago, Arti Shah, resolved to tell the story of Endo warriors living in Kenya. At the time, I had come to Nairobi for the annual Endometriosis of Kenya event.

This documentary is a beautiful symphony of voices that were once stifled and muffled by pain, despair, and shame. Arti has beautifully put them together and presents the trailer of Unsilenced.

One day Endometriosis will be a household name. Please watch and share.

 

31 Days Of Endo ~ Saum Hassan

Day 19 🙂

“Our goal is to make Endometriosis a household name.” ~ Michelle Lee Walters

The reason we share our stories is so that other women will know that they are not alone. Though some symptoms may seem peculiar, we need to understand that Endometriosis cannot be put into a box. It presents itself uniquely in every woman.

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Boldness, courage and strength are words that can be used to describe Saum Hassan. She is a 36-year-old  who lives in Kisumu and works as a counselor for a preventive Healthcare Provider. Her heart is filled with joy when she positively impacts other people’s lives. She has been living with umbilical endometriosis for the last one year.

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I started my periods in 1995 at  the age of 13 and I was excited about it. My peers used to sit and gossip together and call you a child if you hadn’t seen your periods. I was happy that I could now enjoy their company. My menarche was smooth and  I felt normal even though a few other girls would complain of cramps. Then, things changed in October 2002 when I was woken up by a sharp pain in my lower abdomen. I lay on the floor, writhing in pain as I literally screamed the house down and woke up everybody in the house. I saw my elder sister walk out and return with a small tablet on her palm and a glass of water. I took it and felt the relief wash over my body ten minutes later. I slept well and thought that was the end of it. Little did I know that it was just the beginning of a new journey altogether.

In the following months, I experienced pain accompanied by nausea, vomiting and loss of appetite. I gave birth in 2010, and when my periods resumed post delivery, they were worse than anything I had ever experienced. My frequent visits to the hospital didn’t bear fruit as the Doctors told me that the pain was normal.

I resulted to self-diagnosis with the help of Google when I started bleeding from the navel every month from March 2017. Just thinking about dressing my navel was very challenging, but I am more comfortable doing it now, since I have been doing it for a couple of months. During my research, I learned about Umbilical Endometriosis and my story was aired on NTV in February 2018 and K24 on 7th March 2018. As a result many doctors have confirmed the diagnosis though I am yet to go for a laparoscopy to get a proper diagnosis.

To treat the pain, I have been using Ibuprofen, diclofenac, and powergesic at home. When I got to the hospital I am given diclofenac and buscopan injections and also morphin intravenous. Sometimes, a towel dipped in hot water and a hot water bottle help to relieve the pain slightly. Drinking ginger and black pepper tea also offer some relief.

Endo has robbed me of my sense of fashion. I no longer wear skirts, trousers and anything clothing that puts pressure on my waist, due to the constant pain around the abdomen and navel throughout my cycle. Physically, I can’t stand for a long time because my legs start shaking. Sitting is also a problem because I can’t sit straight or lean forward. My social life has been affected because I have to keenly watch what to wear during those bad days and the days after my periods.

I’ve had to make several lifestyle changes including changing my diet.  I have reduced my intake of red meat and sugar. I drink a lot of water and have ginger and turmeric water every morning on an empty stomach

Eight years later, I am still trying to conceive as I hold my marriage together. Sticking to my new diet seems daunting, at times I ask myself if I will really be able to manage it.

Through this journey, I have learned that Endometriosis is real! Women to take reproductive health seriously. More awareness is needed to reach more women and young girls. Sharing stories inspires others to also open up. Doctors should be well equipped with the knowledge of how to help women facing this issue.

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I have found a good support system in the Endometriosis Foundation of Kenya. I have joined both the Facebook and WhatsApp groups and found women who have encouraged me. I realize that I am not alone. It’s important to have a support system, because that’s where we get strength and hope. I’ve been encouraged by the other endo warriors like Elsie Wandera, Njambi Koikai, and Ciru Muriuki.

My favourite flower is the Sunflower. Its brightness throughout gives me light and no matter how dark this endo journey may be there is light at the end of the tunnel.

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You can send her an email, or follow her on Facebook and Instagram.

 

Thank you for sharing your story with us, Saum, and for being bold enough to speak for the women who are suffering in silence. We pray that you get a diagnosis and treatment, and that you will have adequate grace and strength for the journey ahead. By God’s grace, may you hold your child in your arms soon. We are praying that a cure will be found soon and that the suffering of women will come to an end. Here’s to more happy and peaceful days ahead!

31 Days of Endo ~ Tara Langdale-Schmidt

Day 18 🙂

One of the symptoms that Endowarriors may experience is pain during or after sex. The pain can turn a previously enjoyable experience into an emotionally devastating moment.

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Tara Langdale-Schmidt is an endo warrior who has created a non-surgical intervention for painful sex. Necessity is. She shared her story with Lisa of Bloomin’ Uterus in November 2016.

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Tara Langdale-Schmidt lives in Florida, and was diagnosed with Endometriosis when she was 11 years old! She also suffers from Vulvodynia.  Now 32, Tara invented a treatment that is helping women who suffer from pelvic pain all over the world. Today she shares her story and struggles but also shares her victories.

Tara’s Journey: It started when I was 11 with my first surgery. Doctors did not know what was causing my abdomen pain so they the scheduled exploratory surgery. They found a huge cyst which had cut off the blood supply to ovary which killed it. They removed that ovary and tube. This was the first of many surgeries for cysts and endometriosis over the next 20 years.

Endometriosis caused pain during sex, it was an uncomfortable feeling deep inside that I became used to. My sex life was normal besides the endometriosis pain. Initial penetration was never painful until I started to experience a different kind of pain, a very sharp pain I had never felt before.

My nightmare experience with sexual pain began mildly and I started going downhill in 2010. It began as mild pain during intercourse in my vulva. As time when on, the pain became worse, it felt like someone was stabbing me with a knife and burning me at the same time. Intercourse would trigger the pain and it would still burn after having sex. Nothing helped the pain or made it go away. I only told my best friends, and they had never heard of anything like what I was experiencing. Neither had my fiancé, Jason.

I didn’t know it then, but I was suffering from the excruciating pain of Vulvodynia. The pain, both physical, emotional and mental, was agonizing, made it impossible to enjoy sexual intimacy with my future husband and impacted my quality of life for four long years. The burning and stabbing escalated and I would not have sex at all with Jason. We were getting married and probably not going to be able to have intercourse on our wedding night. I was becoming depressed at the thought of never being able to have enjoyable sex again.

My primary gynecologist told me if sex hurt to drink some wine and take Advil. That was in the beginning stages before the pain became worse. Then he realized it was serious, I still didn’t have a diagnosis and I was confused and worried about what was causing the pain. I actually asked my doctor if I had something called Vulvodynia because I found it on the internet. He agreed that is probably was Vulvodynia. He wanted me to try the numbing creams and after that, he called several doctors and told me none of them had a treatment plan for Vulvodynia. He stated doctors did not know what caused it and he was sorry he couldn’t help me. I was given a prescription for Gabapentin cream and Ketamine creams. These are compounded creams, that might help the nerve pain, I was told to use twice a day. Both of these creams cost over $125 each and did not help at all. Also, I tried lidocaine injections which only lasted an hour and left me hurting from the needle. I had many surgeries for endometriosis and cysts, and one surgery they went in vaginally instead of through my abdomen. I thought that maybe the pain resulted from scar tissue. My doctor also thought it could be scar tissue as well.

After no relief with numbing creams, I decided to go to a pelvic pain specialist. He told me that I could take an antidepressant because it can help with nerve pain, do an injection or have a surgery to remove part of the vestibule that was hurting. I did not like these options. I do not like taking painkillers and especially not before sex. After suffering for so long and getting no answers I decided to take matters into my own hands. I had to take action.

From my previous positive experience using magnets to reduce back and neck nerve pain after a car accident, I had a “lightbulb moment” idea to incorporate neodymium magnets into a dilator set for pelvic pain. I used the magnetic dilators for two weeks and then had sex with my husband for the first time in months with less pain than normal. I had just started using the dilator for the first time about three weeks prior to my wedding and I was actually able to enjoy my wedding night. I didn’t think that was going to happen. My husband, who was so supportive, was as thrilled. I was able to have sex without pain.

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Due to my reduction in pain and positive feedback after speaking to doctors about my magnetic dilator treatment and pain reduction, I knew I had no option but to create a startup company dedicated to helping other women with pelvic pain. With my personal pain issues resolved, I knew I had to help other women. Working with my good friend and business partner Robert Smithson, we together founded VuVatech, a company based in Sarasota, Fl. dedicated to helping the estimated one-in-seven women in the US who suffer from pelvic, vulvar pain. With the help of medical experts, we invented a medical device, the VuVa Magnetic Vaginal Dilator that has proven to relieve pelvic pain and sexual discomfort and has improved the lives of women seeking sexual normalcy.

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VuVa Magnetic Vaginal Dilators are a new, non-surgical approach to helping millions of women suffering from multiple pelvic pain conditions and sexual comfort. The dilator therapy can also be incorporated into treatment plans for other conditions such as Vaginismus, Vulvar Vestibulitis, Dyspareunia, Menopause, Vaginal Stenosis, Vaginal Atrophy and Vaginal Dryness. Many women suffering from these pelvic pain conditions have been placed on heavy pain medications, anti-depressants or have been advised to have invasive surgeries with low success rates.

Our VuVa Dilators offer a low cost, safe, non-invasive treatment option to renew the sexual desire and comfort women deserve. Since VuVa Dilators became available on the market in late 2015, we have only used social media, google ads and pelvic pain forums to direct traffic to our website. After selling over one thousand dilators and receiving positive feedback, it validated our decision to perform clinical trials. Clinical trials have provided beyond positive results by reducing nerve pain in subjects, so much so, that each subject purchased a set of VuVa dilators at the conclusion of the study.

Today, sex life with my husband is great. If I use the dilator twenty minutes before we have sex, I can have close to pain free intercourse. During my research, I have found Vulvodynia can disappear or become less painful. I used to feel broken and now I am hopeful and thankful I have a device that allows me to have intercourse with less pain.

 

Words of Advice for Us: Using a magnetic vaginal dilator changed my sex life. My overall message to women in pain: there is hope, there are answers, you do not have to suffer. I’m a perfect example. Keep searching for what helps “You”.

If you wish to contact Tara, you can email her here.  Or you can get more information about Vuva magnetic dilators here: http://www.vuvatech.com/.

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Tara, thank you for sharing your story and for reminding us that we do not have to suffer in silence. It is great to see that you are offering a practical solution that other endowarriors can try. We hope we find a cure soon. Here’s to more happy moments, and to slowly reclaiming what endo has stolen from us.

31 Days of Endo ~ EMS

Day 17 🙂

“If you know it in your bones that you don’t feel right, fight for yourself!  Get the answers you need, because you owe it to yourself.” EMS

Endometriosis has the ability to manifest differently in women. It is mostly associated with painful periods but sometimes it surprises us, and manifests itself differently.

 

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EMS shared her story with Lisa of  Bloomin’ Uterus early last year, after experiencing seizures during her monthly period.

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EMS lives in New Zealand and was diagnosed with Endometriosis this year – at age 34.  This year she exhibited signs of a stroke, dizziness, trouble breathing, all around her period – she fought for a proper diagnosis and had to fight hard.  Stage IV Endometriosis.  Not stress. Not anxiety. Not a stroke…Endo.

EMS’s Journey: Wow…. okay so in February this year I was having excruciating pelvic pain. Doctors in the ER thought it was gallstones so they treated me as such. Upon them trying to flush the gallstones with meds, my body reacted and we now know it was Endo that I have. My brain slowed down and all of a sudden I couldn’t think to form a sentence, then my eyesight went blurry, then I started seeing double and the room was moving. Then my limbs shut down and I couldn’t move at all and I developed a shocking stutter out of nowhere. The stutter lasted close to two weeks. One incredible doctor got me up and moving again but only incredibly slowly, but it was enough for me to get myself the rest of the way. After many doctors came to see me to work out what was wrong, I had a CT scan at which time they were looking for evidence of a stroke and didn’t find any of such evidence. They didn’t tell me anything, they just told my partner that they didn’t find any sign of a stroke.

When we look back on things, we know that I was day 2 into my monthly cycle at this time. I was diagnosed as having ‘my brain go on holiday’. I kid you not, that was the diagnoses I was given. That particular doctor said that once I rid my life of whatever was causing my stress, I would come right. Of course, I didn’t come right.

Then come April, I had my very first seizure. Full blown seizure. I struggled to breath. I remember gulping for breath. I was taken to the ER. The doctor there said that it must be stress. She couldn’t put it down to anything else. I asked for a CT or MRI, I was very angry and said I’d never had a seizure before in my life and demanded that she get to the bottom of it. She said that as I’d had a CT before and it was unremarkable there was no point sending me for another one. So she discharged me.

I went home and the very next day I had a seizure again, again gulping for breath. Back to the ER. This time I had a doctor who was more intent on getting to the bottom of it and he sent me to neurosurgery. A team there monitored me for a number of days but decided that I had extreme anxiety and that I was in denial. I tried so hard to say that that wasn’t me. They put me on antidepressants and made me see a therapist. So I saw a therapist for weeks and she said after my very first visit that she could not detect any anxiety and she worked with me to get my GP to arrange for me to have an EEG. The antidepressants also ironically made me very depressed and I demanded that I come off them. The EEG showed definite signs of seizures and I seized in front of the neurosurgeon there, but there were no signs whatsoever of epilepsy. My doctor put me on seizure meds which helped for a long time until I asked to come off them. They were only masking the effects of everything.

Not long after I came off them everything got a whole lot worse. We didn’t think it could get any worse. My brilliant partner asked to have me checked for my female parts as he had noticed that things only went haywire at that time of the month. Sure enough, I was diagnosed with Stage Four Endo. Now I have a Zoladex implant, but the seizures are still active. I am currently waiting to see a consultant.

I have done huge amounts of reading to try and find a link between the Endo and the seizures. I’m not a medical person of any sort and no medical person yet has been able to confirm any of this, but from what I have read, in very rare cases the Endo can get into a person’s central nervous system. I had two rounds of spinal surgery 5 years ago and had rods put either side of my spine and screws put into my spine and then removed during the second round. I have to wonder if that has something to do with it all. If the Endo has maybe attached itself to my spinal cord. I intend to ask the consultant this when I see him. I just hope that’s not too far away.

So for now, I have seizures every month. And its scary as hell, but today, for the very first time, I have found some relief in finding Bloomin’ Uterus and others who have this also and who are also looking for answers. xo Thank goodness for you all!!

Words of Advice for Us:  If you know it in your bones that you don’t feel right, fight for yourself!  Get the answers you need, because you owe it to yourself.

The Last Word:  Know that there are others out there, sometimes we spend hours searching, days, months searching, but we can find others who know. Today, I found this blog and I swear it is like a Christmas present to me to have found it. Now I’ve found others who also have seizures.

If you wish to contact EMS, you can email her here.

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Thank you, EMS for sharing your story! You are a warrior. You have spurred us on, we are encouraged to never stop seeking for answers when we feel that something is wrong. We pray a cure is found soon and the journey gets easier.

 

 

31 Days Of Endo ~ Patricia Anne Young

Day 16 🙂

Everybody’s journey is unique. You have to make a personal decision to fight endometriosis and to remain positive each day. As we face the pain and limitations brought about by endo, we pray that a cure will be found soon. Despite the pain, we are keeping hope alive.

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Patricia Anne Young first shared story with Lisa of Bloomin’ Uterus early last year. She got a diagnosis over 30 years ago.

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Patti was diagnosed with Stage IV Endometriosis when she was 21 years old.  Today she is 52 years young and lives in Ontario, Canada.  She continues to suffer, but holds tightly onto Hope and has a wonderful network of supportive and understanding friends and family.  Fight on, Patti.  Fight. On. ❤

Patti’s Journey: My Endometriosis Journey, By: Patricia Anne Young

One day after school, my friend invited me back to her place for a swim. We got changed, and I told her I’d meet her outside, as I had to use the washroom… little did I know I was about to become a “Woman”. I was 12…

By the time I was 16, my periods were horrendous, painful, & very heavy, like having Montezuma’s Revenge! My family doctor kept telling me that “all girls (your age) have painful periods…” and then one day I read about Endometriosis in Chatelaine Magazine, so off I went to the library to do some research. When I brought it to the attention of my doctor, he told me to “stop spending so much time in the library and go out and have fun…” But that’s just it, I wasn’t having any fun, I was always in too much pain, or bleeding too heavily to do anything.

One day, in Grade 9, my pain/bleeding was horrible, so I signed out and walked to the bus stop to catch a ride home. While waiting, I became faint…just then the bus arrived, the driver recognized me & he got off the bus to help me on. He asked the person in the first seat to move so that I could sit there, and he could keep an eye on me. He remembered my stop and helped me off the bus. I walked home from there, which seemed like an eternity, but actually, it’s only a 5min. walk.

My mom took me to the family doctor, to find out if there was anything he could do for me. He advised putting me on birth control would alleviate the pain and length of time my period lasted. Mum wasn’t too keen on that idea, being a very strict Catholic; however, she filled the prescription for me.

While I still had quite a bit of pain, it did work for the most part. I had to keep changing prescriptions because I’d start to spot. At age 21 I became pregnant. At 10 weeks’ gestation, my boyfriend of 3 years became physically abusive and I hemorrhaged. Following the termination of my pregnancy, the pain in my uterus felt like Edward Scissorhands was living there! A few months later my appendix burst and while in the OR, the surgeon noted a lot of old blood in my abdomen and asked a gynecologist to have a look. He said: “this poor young lady has Stage 4 Endometriosis” And my journey began…

Between the years of 1987 and 2016, I have had a total of 16 surgeries, met with a number of specialists and have had numerous procedures, including ultrasounds, MRI’s, CT scans, colonoscopies, x-rays, not to mention different therapies such as massage, physio, osteo, pelvic therapy, as well as Lupron, acupuncture and botox injections. I have also been on a gamut of medications from Tylenol 3’s to Oxycodone – Fentanyl Patch to Methadone. I am currently trying Cannabis Oil, with fingers crossed that it brings my pain level below 5/10.

Following a hysterectomy and lysis of massive bowel adhesions in 2007, I was pain-free for 1 year. Then one day while doing the dishes I had an intense pain on my left side. I made an appointment to see my gynecologist, she did some blood work, and sure enough, because an ovarian remnant was left behind, adhered to the Sigmoid Colon, my endometriosis remained active. I had 3 injections, over 3 months, of Lupron, which was supposed to suppress the endo activity, but it did not. Further surgery to remove the ovarian remnant was not advised as it would have been too risky and a positive outcome couldn’t be guaranteed. I was referred to a pain clinic in Toronto for Pain Management.

In 2010 I had to stop working due to the severe daily pain, which affected not only my ability to have a career, but my relationships with family and friends, always having to cancel engagements due to pain, and I could no longer compete in equestrian events, which had been my very much loved passion from the young age of 8. Exercising is difficult, to say the least, even Yoga!  Along with the chronic abdominal pain, I have chronic issues with my digestive tract (hiatus hernia), bowel and bladder issues (IBD, LS, and Chronic Bladder infections).

This disease has greatly impaired the quality of all aspects of my life; however, having a supportive husband, sister & a few close friends have been invaluable when trying to cope with Endometriosis.

Words of Advice for Us:  Early diagnosis is key and your first surgery should be with a specialist that knows about Endometriosis, Excision, and Lysis of Adhesions. Advocate! Do your own research and speak up, don’t be shy, after all this is your body and future at stake. Having an understanding support system in place makes this journey a lot easier to get through too.

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Thank you for sharing your story, Patricia. We are inspired to keep fighting for ourselves, even when we feel like it is us against the world. To be our own advocates. We are praying and hoping that a cure will be found soon.

Keep shining, Patti!

#31 Days of Endo ~ Sarah

Day 15 🙂

23 years after Sarah first sought help, she got it.

Sarah shared her story with Lisa of Bloomin’ Uterus in March last year.

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New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years.  Today, a year later, she shares her long and difficult Journey with us.

Sarah’s Journey:  I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.

It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16-hour class around it and teach it inside a week.

When I was a kid, I was the *fastest* kid in the fourth grade. I outran everyone regardless of their height, gender, or age in the fourth grade. And I worked on my grandparents’ farm in the summers. I lifted hay bales. I carried things bigger than me! I was strong. I was fast. And then my body started changing. My weight shifted. My period started.

When I was 15 the pain of it became unbearable, I thought at the time. It lasted 8 days and it was heavy for most of them. I would throw up or pass out sometimes because of my period. I was anemic. I came home from school frequently because of my period. My mother was irritated and didn’t think it was real. And don’t get upset with my mother!

It turns out she had Endo, too. She didn’t get diagnosed until she was in her 50s. So, it’s no wonder she looked at my suffering and thought it was normal–it’s what she was told about her own suffering. And she’d never heard of Endometriosis.

Something else that happened when I was 15 was that I managed to subluxate some of my ribs and score a compression fracture in one of my thoracic vertebrae. The simple act of getting dressed for school is what made this happen.  So, in addition to period pain, there was a constant pain in my upper back–constant and chronic as in every single day, every single minute, there was a pain. The doctor my mother took me to accused me of trying to get out of gym class and didn’t even order an X-ray. I found out about the bone damage 9 years later when I was getting X-rayed for something else.

This set the stage for doctors not believing me about any of the pain I was in.

It also kept me exercising no matter how bad the pain got because I was told that exercising would make my “imaginary” pain better. I took myself to a gynecologist because that was my only option. Thanks, Planned Parenthood, for being a thing. They didn’t diagnose endo. To be fair, no one diagnosed it or considered it for another 23 years anyway. So, I still only have love for them. At least they listened.

I first learned about Endometriosis from a high school friend who had been diagnosed. Her suffering was worse than mine, so I never considered that I could have it. I assumed I was being given accurate information and that my pain tolerance must just be low. I kept my head down, took ibuprofen every day for my back and more for my period, and kept on not getting any better. I took ibuprofen every day for about a decade. I took lots of ibuprofen. Every day. It didn’t stop the pain but made it manageable, tolerable.

I also started taking birth control pills at some point. Some brands helped with my period pain, some made it worse. All of them had side effects that kept me switching or stopping altogether. Benefit to detriment ratios became nearly daily contemplations. At some point, I decided The Pill wasn’t worth it. Pain was a better option.

I’m pretty sure that decision came after I ended up in a neck brace/soft cervical collar from a little traffic accident followed by carrying something bigger than me incorrectly. I couldn’t get my doctor to believe how much pain I was in then, either. So, I took so many ibuprofen than I pooped blood for a few days. When I told my doctor that, she finally sent me for physical therapy, an MRI, and to a neurologist. Needless to say, that was the end of my love affair with ibuprofen. I can take other NSAIDs, but, even now, over a decade later, ibuprofen creates horrible abdominal pain and blood where there shouldn’t be any.

So what about those cramps? Aspirin was my first solution. It thinned out the clots, so that was a relief. It didn’t do nearly as much for the pain. I got really good at controlled breathing and pretending. And I had to pretend. About this time, I had to change jobs due to carpal tunnel and thoracic outlet syndrome. I couldn’t do my lame desk job. I couldn’t paint. I even had trouble cooking for myself. (I will be forever grateful to the Mexican restaurant down the street from me at the time and their mostly-healthy, affordable tacos.)

I started teaching. The classes were intermittent and the pay was good, which allowed me time to recover in between teaching stints. I didn’t always manage to schedule classes around my period, but I tried. Working from bed on the worst days is a luxury most of us don’t have. It’s a luxury I sometimes had. Eventually, my arms and hands improved so I could re-learn all my painting skills, but my period never got better. It was always something I dreaded. And still, no gynecologist gave the pain a second thought. Eventually, I stopped talking about it. I pretended.

Just like I pretended in front of my students. Most days I was behind a computer screen. Some days I was also behind them. So I could keep my voice level–or even happy–while I hunched over, massaged, turned green. And in a decade of teaching, very few students noticed enough to say anything or react. Every now and then someone would mention something about my voice not matching or seeming like I was acting. It’s true. I was acting. I was pretending to be okay. And once, a male student turned around to look at me while I talked…. He did the whole Warner Bros. cartoon shock face reaction and turned back around again. I kept on talking, joking, whatever. Even though my back hurt, my arms and shoulders hurt, my period was Hell on Earth, it was all fine as long as I could still go dancing and still go walking.

My health sometimes kept me away from dancing for months or more at a time, but I always got back to it. I performed a little, even. I spun fire. I belly danced. I even got to perform on the main stage at Rakkasah a couple times. It was a luscious and frivolous hobby, and it got me out of bed. Over and over again, dancing was the reason I got out of bed, left the house. There might be weeks at a time that I didn’t teach–that I didn’t *have* to leave the house. Dancing got me out. Going for walks got me out. And then I fell down hiking. With 3.5 miles to go and the sun waning, I messed up my left leg. No one believed how bad that was either. So I did the best I could. I limped for a couple years. No biggie. I went for shorter and shorter walks. I still danced as best I could. Then I twisted my sacrum. Finally, by lying about what happened, I convinced a doctor to get me into physical therapy. I limped less.

And my period ever so subtly kept getting worse. I had these horrible things called Essure coils put into my fallopian tubes as a form of permanent birth control. I’d given up on The Pill and the risk of pregnancy wasn’t something I wanted to continue facing. Sex became an experiment in torture after that. Any deep thrust was like a knife inside my gut. And my period, yup, kept getting worse. And slowly, I started to bleed in between periods a bit and have discolored discharge.

In November of 2015, I had a period every week. It wasn’t constant blood, just one massive clot every Wednesday. Seriously. Every. Wednesday. So I made an appointment with a doctor to talk about that and an increase in my lower back pain and the leg pain that just wouldn’t go away and about blah blah blah medical history. She was not amused. She was not terribly helpful. She also didn’t really believe me about the pain–except for my period/pelvic pain. She referred me to a specific gynecologist, for an intra-vaginal ultrasound, and for physical therapy. I don’t know if the physical therapy, the ultrasound, or just my body continuing to fall apart was the cause, but inside a few weeks I was barely able to walk at all.

I went back to the doctor–with husband insisting on coming along (yay!)–after literally falling down on the ground because my legs gave out. It wasn’t the first time this had happened, but it was the most shocking and the most painful. My left leg, in particular, felt like there were large chunks of twisted metal in it when I walked mixed in with the feeling of cleavers. The twisted metal and cleaver pains were new. An MRI, some x-rays, and a physiatrist appointment later, I was getting epidural cortisol injections to my spine. They helped a little. The physiatrist said that the amount of pain I was in didn’t make sense based on the testing. Then he added something wonderful. He said, “There must be something else going on.”

When I finally got in to see the gynecology specialist, I had yet another intra-vaginal ultrasound. This one with saline because she thought I had uterine polyps. She was right. That experience was so painful I could barely stand afterward, let alone walk. I was scheduled for a hysteroscopic polypectomy. That also helped with a little of the pain. Again, I was told there must be something else.

After those two procedures, chiropractic and physical therapy visits were more useful. I could get from the bed to the bathroom without resting. I could eventually walk from my car to my appointments without gritting my teeth or taking breaks. The blood in between my periods was gone, but my period pain was no better. It was still getting worse, and the rate of my cute little decline had increased as my physical activity had decreased.

In May, we moved to San Diego. In July 2016, I wept, yelled, and pleaded my way into laparoscopic surgery to remove the Essure coils (and my fallopian tubes because that’s how that’s done) and to look for Endometriosis. I was in so much pain–backbreaking, mind-numbing, fully crippling, life-hating pain–during my periods that I went in asking for a hysterectomy. She talked me down. During surgery, she found extensive Endometriosis. For whatever reason, whether it was all that exercise I used to do, my low-estrogen diet due to Hashimoto’s Disease, or just plain luck, I had very little scar tissue and no adhesions. She deemed it Stage 1 Endometriosis. When the pathology report came back, it verified Endometriosis, said that my removed fallopian tubes showed not only a bunch of endometriosis, but also evidence of a previous burst. It didn’t specify if that was from an Essure coil puncturing a tube or from something else.

23 years after first seeking help, I got it. My uterus prolapsed mild-moderately after surgery. Lupron wreaked havoc on my body after surgery. But, I’m figuring out how to walk again. It’s arduous. It’s frustrating. It’s painful. It’s also working–slowly. This is part of what was so hard about today.

All those little mentions of non-Endo pain mostly have to do with another health condition called Ehlers-Danlos Syndrome. It’s a collagen disorder. People with Ehlers-Danlos are extra flexible and are prone to dislocations, subluxations, sprains, and the like. It also takes us longer to heal. And there’s a higher rate of Endometriosis among Ehlers-Danlos sufferers than among the general population.

And I’ll type this again for my own stubborn benefit: It takes me longer to heal. I am no longer fast. I am no longer physically strong. I have trouble lifting a gallon of juice, let along a hay bale.

And not only did I finish dead last today, I couldn’t even speed up for the photo at the end. I just couldn’t. It wasn’t physically possible for me to go faster. I was already hiding a limp and pretending to not be nauseous. Lisa said not to worry about it, to keep going at whatever pace I could manage (thank you for that). But I do worry about it.

I used to keep myself going because even if everything hurt, I could still walk. As long as I could walk, I would be okay. And I know it’s been less than a year since surgery. I know that I’m still clearing hurdles, even if they are only 3 inches tall.

I also know, as of today, that I have to find new ways to define myself. Because the effort to get well is more important than my notions of who I am.

I am no longer fast. I am no longer strong. These are things I need to accept because, in hindsight, holding on to those two identifiers so desperately probably did me more harm than good in my past recovery endeavors. Pushing myself to get to a goal is not something I can do anymore. The risk of long-term harm is too real.

The difference between being able to physically get myself out of bed or not is as small as turning incorrectly or walking too fast. I have to be okay with just finishing. I have to be okay with not finishing. Because I have to be okay.

*

Sarah, thank you for sharing your story with us and for inspiring us to keep seeking our own answers. We celebrate you today and do hope that it has gotten easier over the year. We hope that you’ll be able to do the things that truly set your heart on fire. Sending you lots of hugs!

 

 

#31 Days Of Endo ~ Shadoegirl19

Day 14 🙂

I read an interesting fact the other day, Endometriosis has been found in all organs except the spleen.

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Endometriosis presents itself uniquely in different women, the need to fight this disease is the same across the world. Shadoegirl19 shares her battle with spinal endometriosis.

This story was originally posted on Bloomin’ Uterus. Lisa has graciously allowed me to repost it here.

 

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Shadoegirl19 was just 16 years old when she learned she had Endometriosis.  Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement.  Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine.  However, she remains incredibly strong and supportive.

Shadoegirl19’s Journey:   At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the onset of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).

Back then (1980’s) girls my age didn’t have “female problems”. Every time I had pain prior to the ovary burst they told me & my parents everything from gastric issues to I was looking for attention.

After the true diagnosis I continued to have issues however, I was extremely blessed to be able to give birth to 3 healthy baby girls in between bouts. Throughout the years the problems continued to plague me and I had multiple procedures (ever heard of a Cauldocentisis?? OUCH), surgeries & treatments to try to stem the growth of the disease. I finally made the decision to have a hysterectomy when I was 30. They left my remaining ovary in to save me from having to take HRT or go into menopause so young.

Unfortunately, that only lasted for 2 years before the cysts started again and I had to make the decision to have the ovary removed also. After that, I went on to HRT and live awesomely pain-free for about 12 years until I started to have problems with my hip & sciatica. Of course, I figured it was just my luck to end up with a bad hip after all the years of suffering from abdominal pain. It got really bad after I had a small car accident. Because the pain was so severe (radiating down my leg and causing numbness & weakness all the way to my toes) I had an MRI. When the doctors read it they realized I had a crushed disc and sent me off to a Surgeon. When I went to see him he asked me all the normal questions about my pain and symptoms, did an exam and went to look at the MRI once more.

He then came in and delivered some news I never expected….it wasn’t a crushed disc they were seeing, it was an Endometrial Mass between my spine & my sciatic nerve!! I was absolutely shocked! The worst part was that he advised surgery was not a viable option due to the proximity of the mass to my spine and how badly it was intertwined with the nerve bundle. He said he wouldn’t perform such a risky surgery because the chances of making it worse were far exceeding the chances of making it better.

So, after all these years & procedures, including my complete hysterectomy, the Endo wins again. Now I live with a pain patch and pain pills daily so I can actually walk and have some semblance of a normal life. I refuse to let this damn disease win! I have 3 awesome daughters & 2 beautiful grandchildren to spend time with and I won’t let some pain keep me from being happy! My only fear is that, since 4 of the 5 of them are girls, they will all suffer too. My daughters have each been diagnosed with PCOS and one of them confirmed Endometriosis so far. We knew to watch for it early so we’ve been treating it from early on and, obviously, it hasn’t affected my oldest since she is mom to the 2 grand babies. I pray that someday we can find a cure for this and stop the cycle of pain!

Words of Advice:  Don’t give up!! If you aren’t being heard by your doctor, find a new one! Look for someone who specializes in Endometriosis and get the treatment you deserve. This is a real issue and we shouldn’t be made to suffer for “being a girl”!

If you wish to contact Shadoegirl19, you can email her here.

Thank you for sharing your story, Shadoegirl. I pray that we find a cure soon. Sending you lots of hugs from Kenya. Your story will inspire many to get a diagnosis.

#31 Days of Endo ~ 11 Tips for Mums of Endowarriors

Day 13 🙂

I am taking a short break from sharing the stories, to share some tips for mums of endo warriors. More girls in their teens and early twenties are getting a diagnosis, more often than not, being diagnosed with endometriosis throws them and their families into confusion.

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Endometriosis is one legacy no mother ever dreams of passing on to her daughter. The reality of this statement echoed through my mind in 2015 as I nursed my daughter. When I held her and stared into her little eyes, I felt a strong desire rise up within me, to do something to make sure her story was different. That the story of her generation would be different. A few months later, Yellow Endo Flower wsa born.

Along the way, I have met Endo warriors, a beautiful community of women fighting the same battle. We are one in ten women.

There are mothers reaching out, wanting to help their daughters navigate the murky waters. It is hard for them! Let no one tell you otherwise. Watching your little girl lay in foetal position because of pain is heartwrenching to watch, month after month.

For the mums, here are a few things that you can do to help make the journey a little easier for your daughter:

1. Believe Her

When she tells you that she is experiencing pain with her period, believe her. Do not try to minimize or trivialize the pain. Pain is the body’s way of asking for help, if we do not listen to its whispers, we will have to stop our day-to-day activities when it screams.

2. Be Present

Buckle up, dear mama, and make the decision to be present for the long haul. The journey may not be smooth, but your presence makes a world of a difference.

It may seem easier to just give her money to see the doctor, but, depending on the relationship that you have with her, she may need you to hold her hand and encourage her heart. Waiting rooms and emergency rooms can be very lonely places.

3. Find a doctor who understands Endometriosis

You may be tempted to take her to your Ob/Gyn, while s/he may be a good place to start, it is good to see a doctor who is trained in laparoscopic surgery and who deals with a lot of Endometriosis cases. Find a doctor who has a good bedside manner.

You can find referrals in your local Endometriosis community. If you do not know where to begin, you can send me an email via yellowendflower@gmail.com and I will be in touch.

4. Get informed

Information is power, it is difficult to manage what you don’t fully understand. Read more about endometriosis and how it affects her body. The top searches from google are very informative. There are books for sale online that are good resources.I have been sharing Endo stories in the series #31DaysofEndo.

From the information readily available, evaluate the changes that she can make, and those you can make as a household.

5. Evaluate the triggers

Endometriosis symptoms may be aggravated by things that an endo warrior is exposed to. The only way to establish what the triggers is by eliminating the potential trigger foods and products and keeping a record of the progress.

6. Keep a period diary

Encourage her to actively keep a period diary, to record the pain and other symptoms when they strike so that she can understand the patterns in her cycle. If you are looking for a simple diary to start with, I have written a period diary book titled Bloom, it is available in Kenya for 500/=.  It is ideal for girls and women.

Understanding her cycle will enable her to forecast her energy and work around the flare-ups as she works on managing the symptoms.

7. Ask questions

Note down your concerns on a paper and go with it when you visit your doctor. Ask the doctor to break down the treatment plans and to let you know what you should look out for.

Trust your inner voice and don’t settle for an explanation that doesn’t sit well with you.

8.  Educate those around her

People tend to be less sensitive to what they do not understand. Share with the people around her: her friends, school, and people who live with her, what Endometriosis is, and how it may affect her, that way they may be more understanding and willing to help.

9. Keep a medicine log

Pain and symptom management are an integral part of the Endo journey. Before she starts any medication, make sure you read the pamphlet and make a mental note of the side effects to look out for. Note down any reactions and allergies to drugs so as to mention them to a medical practitioner in future. Keeping a log will also help you to see how much medication she needs to manage the symptoms.

10. Offer psychosocial support

The emotional strain caused by endometriosis should not be overlooked. Many endo warriors tend to suffer in silence because they do not know where to seek help. Find your daughter, someone, she can talk to. Find a support group or forum that she can plug in to, and meet other girls and women who are walking the same path.

11. Keep hope alive

The consistent flare-ups, hospital visits, medication can grey a girl’s dreams. The constant feeling of fatigue and malaise can take the toll on you. Encourage her to write down a list of her ambitions and dreams. When she is well enough to do them, encourage her to pursue them. Celebrate the small steps as you wait to make the big steps.

Do fun things with her, talk to her, love on her and be there for her.

All the best, mama! Your labour is not in vain.

If you’d like to talk more about Endometriosis, feel free to drop me a line via yellowendoflower@gmail.com

 

 

 

 

 

 

#31 Days Of Endo ~ Shiru Muraya

Day 12 🙂

Endo can push you to the wall, and force you to give up some of the things that you were so sure you couldn’t live without. Then, what started off as a diet becomes a lifestyle, a way of life. Shiru Muraya shares with us her journey of pain, courage and a new found hope.

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My periods begun in high school. To be more specific, mine begun while on a fantastic holiday in Naivasha where I now had to explain to everyone why swimming was not an option.

 

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I am now a 26-year-old daughter, sister, cousin, niece and, for 1 year now, a proud wife.

From the information I gathered, my endometriosis began in high school when I was around 17. The period pain intensified. I would narrate the pain to my mum she’d tell me that it is okay, what I need to do is pop a pill. I always thought lightly how my mother took comfort in pills, not realizing my mother and I faced, and still face, the same battle.

 

As a teen I had severe acne, and the dermatologist prescribed for me birth control pills. The relief was instant, the pain decreased. At such a tender age, not knowing the side effects of the pills, I began to experience anxiety, depression and heart palpitations. I was a newly initiated health freak and I got to researching. My conclusion was that this method was not going to work, so stopped taking them and this disrupted my menstrual cycle. I discovered that I loved to read about health and wellness.

 

I became a vegetarian. Yes people, by choice. And let me tell you, my family took turns at challenging my new lifestyle. I am glad to say that it has been ten years and counting. The diet change made a small difference in my pain levels.

 

For over 5 years, I continued with Ponstan, Panadol and hospital visits to relieve the pain. One major symptom held me down every month, I was fatigued.

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Yes, I was eighteen and fatigued, and still not aware I had endometriosis. I continuously blamed myself for not being good enough. I told myself that I was lazy, and started exercising two to three time a day, pushing my body further into a vicious cycle of fatigue, insomnia and pain. I would bloat so much that I could not button my trousers.

 

In 2014, as I went through the wild fun of university, I began to drink and neglect my health. With school and a part time job, my body began to deteriorate and even though I was not eating well I gained 5 Kgs. What could this be? I was well rested but exhausted. No matter how much exercise I did, the weight would not budge. Then my period did not come for one, two, then three months. I panicked!

 

With an insurance cover that I insisted on getting during the year, I took to the hospital. The doctors told me I was pregnant and my hormonal balance was causing the issue. This was without any positive urine or blood test. Doctors!

 

As my symptoms grew worse, I researched my symptoms and diagnosed myself with either an ovarian cyst, PCOS (Polycystic Ovarian Syndrome) or endometriosis. The next time, I marched into the hospital and demanded an ultra sound. And lo and behold, there was a 10cm * 10cm ovarian cyst in my right ovary! The doctor did not even apologize for the misdiagnosis. After three months I had had enough, I packed my scans and patient history never to return to the hospital again. I booked an appointment with a gynaecologist who came highly recommended.

 

With my appointment on the Monday, I continued my weekend with hope. Unfortunately, the ovarian cysts ruptured, and I has no idea what was happening when they ruptured. I fell to the floor in agony, sweating and feverish as my boyfriend, confused, helped me into the shower for a cold rinse. The pain subsided and I insisted I was fine enough to wait for my appointment.

 

In the morning, my boyfriend insisted on accompanying me to see the doctor. When I got to the clinic, the nurse took my temperature and blood pressure asked me how I felt and she left. Two seconds later, the gynaecologist entered the room and confirmed the tests, he then asked me if the night before I had suffered severe pain, and I confirmed. He calmly explained that the cyst had ruptured and I was experiencing internal bleeding.

 

He drafted a letter for an emergency laparoscopy surgery to be performed the same day and off I went. At this point, I was scared out of my mind! I was not mentally prepared for this. The surgery was successful.  As I sat there in bed, my mother took to the university with doctor’s letter for leave of absence, and came back empty handed as the university did not understand.

 

With only two weeks to recuperate, I took to the internet, YouTube videos, articles etc. I began my lifestyle change. When I resumed university, a stinging pain began to torture me. The doctors confirmed that an infection was imminent and I had to rest. It was either I failed my classes for missing them, or the infection spread. Neither was a choice. This is when I accepted help. My boyfriend took to helping me with life. Feeling vulnerable and weak almost sunk me.

 

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I discovered Ayurveda in the quest to grow my hair. That is a story for another day. Ayurveda has a lot to offer in natural ways to heal your body. I use Eve Care by Himalaya Herbal healthcare. This helps stabilize my hormones and diminishes the pain significantly. I take it for six months and it keeps me going through the year.

 

Early 2017, I had my first flare up in two years. It’s said that after two years after surgery the symptoms are more than likely to return. I had been drinking a lot of coffee to get through the day for one year and my body was done. As the month began, I started vomiting every morning. I could not eat. I started to gain weight, I had chronic backache, pelvic pain, fatigue, fainting and hair shedding. For one year, I had been deemed ‘overwhelmed’ at work, but I was too embarrassed and ashamed, to share the real story.

 

The challenge of endometriosis meant that as an outgoing lady, I was easily reduced to a crying helplessness due to the pain, fatigue, confusion, frustration. Chronic fatigue can make a professional career difficult.

 

Let’s just say I was a mess. After some deliberation with my family, I made the decision to leave employment and take care of myself. Some said it was a drastic decision, but it was necessary for my sanity and that of those around me.  I have taken 8 months to recuperate and regain my balance. It has been a lot of sacrifice.

 

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I had to sit and really think about the quality of life I wanted. After quitting my job and sleeping for like two months, I began to research more and more on diet and Ayurveda. I started to eliminate more items from my diet for the long haul. I mentally prepared myself for a transformation. This led me to transitioning from pescatarian to vegan or whole plant-based diet, giving up ALL caffeinated drinks and swimming at least 5 times a week. Ladies, this truly has been a transformation. My body, mind and spirit have been restored. I no longer need days of auto pilot to go through my menstrual cycle. During this transition, I fought hard with myself as I slipped back to cheese or bread. This is not a diet for me, it is my lifestyle now. My symptoms are not all gone, but they have subsided.
In my time off the corporate world, I’ve concentrated on my business @Urban.bantu. A business I had started last year in my kitchen. The facts are out there, that lotion, detergents and beauty products have chemicals that elevate estrogen and cause more harm to us. My history with eczema, acne and un-even skin tone brought about the curiosity to explore DIY cures. I currently offer whipped body butters and African black soap with more products to come in this year.
I have a new spark in my life, I have learned the value and greatness of self-care, sacrifice and family. I will NEVER sacrifice my health and well-being. Remember that no one will understand what you are going through until you speak up. As I continue this journey, I aspire to help endo warriors through their journey of healthy living.

You can follow Shiru on Instagram and connect with her on Facebook. You can make your orders here.

Thank you for sharing with us your story, Shiru, and for inspiring us not to be afraid to make seemingly drastic decisions for our benefit. We hope that you will have more happy, painless, boisterous and hope-filled days. We are looking forward to the other endo-friendly products that are in the pipeline.

 

 

#31 Days Of Endo ~ Juddy Wanjiku

Day 10 🙂

Endometriosis is messy.  It comes and turns your life and emotions upside down, and leaves you to deal with the aftermath.

 

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Juddy Wanjiku shares what Endo has done to her, and how picking up the pieces is not as easy as it may seem. Pain is not normal, pain medication can be addictive.

 

My name is Juddy Wanjiku Munene, my friends call me Shiko. I am 32-years-old and I work as an office administrator at Saracen Media. I am an ambivert; I love God I enjoy a delightful book and movies. My nieces and nephews fill my life with love, laughter and joy.

 

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I started my period at the age of thirteen, I was scared.  I remember they started in while I was in school, but I kept it to myself and didn’t tell anyone. At the end of the day, I went home, showered and slept. Our house help saw my stained clothes and told my mum, it was very embarrassing. For a couple of years, my period was painless and would come only for 2 days. However, this changed when I turned sixteen.

 

When I started experiencing pain, no one seemed to understand me. Every time I raised the issue I was literally shut down and told its normal all women go through it. My mum would not have any of it, she would give me Panadols and escort me out of the house to go to school. I would then spend the whole day sleeping at the school’s sick bay. One day I had an asthma attack and I was in pain, my dad took me to the hospital and I told the doctor that I was in pain and he gave me an injection to relieve the pain. I was not in a lot of pain at the time, but I got an idea, I would walk to school, wash my sister’s clothes get paid and save the cash and at the end of the month I would go and get injections. That is how I survived high school.

 

After high school, it got really bad and I would bleed excessively. That is when my parents took me seriously and took me to KNH where I saw several gynecologists, and all they would do is give me antibiotics and painkillers. One of the doctors accused me of being promiscuous. 

 

The pain was so bad, no one understood me and I went into severe depression. I thought I was going crazy, I thought it was all in my head and I wondered why people did not understand me. 

 

After months of treating infections and bleeding one gynae at the KNH suggested that I get a hysterectomy that’s when it hit my mum that whatever I had was serious but she could not have it I was only 20. I thought about it and went to talk to my pastor for him to allow me to have a kid out of wedlock then get the hysterectomy but he refused and instead introduced me to a doctor who was a church member, and finally, at twenty-one, I got diagnosed with endometriosis.

 

I have tried everything to treat endo, I’ve had 5 surgeries in total, taken most of the painkillers. I have been in rehab after getting addicted to painkillers. I have numbed the pain with alcohol. Taken enough miti-shamba-dawas (herbal medication) I have contemplated getting a baby as a remedy.

 

Endometriosis has basically taken over my life and the older I get the more severe the pain gets, I can no longer dress the way I want, I don’t have a social life and I don’t even have time for a relationship.

 

I have had to change a lot what I wear, what I eat, where I hang out and with whom I hang out with. I no longer eat what I want, I must watch what I eat. I have eliminated dairy and wheat from my diet as I find other ways of taking care of myself to at least have a “normal” life.

 

I am currently struggling with depression, severe pain, heavy bleeding, fatigue and low energy levels. I struggle to get out of bed, sometimes going to work for 5 days is a miracle. I am glad I work for the most understanding employer ever, my boss is the best.

 

I have learned that I am not crazy, the pain is real and that’s it’s not in my head, and,  that its ok not to want to get out of bed. I am learning to take care of myself better, to eat right and exercise when I can. And to find happiness in the smallest of thing like going for a church service, doing my nails or going for a Zumba class.

 

To my fellow endo warriors, remember, endo is not the end of the world and it’s not in your head. Painful periods are not normal! Speak out until someone hears you. Eat right take care of yourself enjoy the smallest things in life.

 

You can connect with Juddy on Facebook.

 

Thank you for sharing your story with us, Juddy. I pray that you will have painfree days, and that you’ll be able to do the things that fill your heart with joy.

 

 

#31 Days Of Endo ~ Genevieve Byrt

Day 9

Endometriosis affects 1 in 10 women around the world. I am so thankful for the internet, it has brought information and community closer to us in Kenya. One of the blogs, that I have followed for a few years is Bloomin’ Uterus. Lisa writes very informative posts on Endo and how it affects out the body, she also shares Endo stories.

 

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Our Endo warrior today is Genevieve Byrt’s story. She first shared her story on Bloomin’ Uterus. She runs Finding Fortitude, where she writes about her endo journey, encourages other endo warriors and shares the wisdom that she has picked up along the way.

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Genevieve felt the symptoms of Endometriosis since her first period.  She was diagnosed when she was 21 years old, and is now 28.  She shares her story with us today.

Genevieve’s Journey: I thought I was dying.

 

I was on a family holiday, lying in our camper trailer bed with my mum and my little brother. I was 12. I think my poor mum, who was a nurse, was at her wits end by sunrise, and had given up trying to diagnose me after an hour or so. The pain in my abdomen had me convulsing, crying and curled up into a ball clinging my legs to my chest for dear life while I rocked back and forth. I was given some Panadol, and while my mum and brother proceeded to sleep, I made the cold, windy walk up the hill to the campsite toilets over a dozen times throughout the night thinking, “This is it. I’m going to be one of those news articles, where a young girl dies a mysterious death in a caravan park”. I remember sitting in the showers in the middle of the night, on my thongs (so I didn’t get butt tinea from the shared bathroom) and just feeling like I should have been at a hospital. But I was so desperate not to cause a scene or be put on to a helicopter in front of the entire Robe Caravan Park.

 

Alas, I was not dying. I was ‘becoming a woman’. Well, I tell you what, my mum was extremely excited (and relieved) when I informed her of the milestone the next morning, but I, on the other hand,  was mortified and equally terrified at the thought of this happening on the regular. If this was to be normal, I was pissed off that nobody warned me that ‘period cramps’ felt like hot lava and barbed wire having party in my uterus. Over the next six or so years, I missed a fair whack of school, wrapped up on the couch with hot water bottles and blankets, and a plethora of pain medication – much to the confusion of my parents who wondered how I could possibly be in that much pain. I skipped classes regularly to go and hide in the change rooms so that I could lie on the floor in the foetal position and try and survive the rest of the day.

 

For the next 10 years, I was assured that this pain was normal, and that all girls go through it. I was admitted to hospital twice with ‘suspected appendicitis’ when in actual fact, it was just a period. Lucky old me also didn’t have to wait a precise 28 days. Oh no. I was blessed to have 10, 65, 4 or 27 day cycles. They were never normal and they were never short. Because of this, teachers didn’t believe me when I would tell them what was going on – “you used that excuse the other week/day” they would say. I suspect (sorry mum) that my parents also thought I was just piking out of school most of the time.

 

At one stage in my life, I even had a boyfriend who laughed in my face when he saw me fall out of bed after rolling around in agony whilst howling with tears. That same night I was having difficulty seeing clearly because the pain was, literally, blinding. I could barely walk, yet I was told to drive myself to the hospital while he begrudgingly slept in the passenger seat, because “calling an ambulance is a bit dramatic, don’t you think? I will go, but for the record I think you’re overreacting”. So I did (this was also before I grew a backbone and some balls – not literally). Word to the wise ladies, if this is something you are facing in a relationship, kick them to the curb! Even typing this out makes me mad.

 

Now, before this story gets any darker, I will stop with the descriptions. I’m sure you get the picture. There were a lot of times where this wasn’t an issue and I got to live a normal life. I am in a far better position than so many other Endo Warriors. For that, I am beyond grateful and humbled.

 

However, pain that stops you from living your life and carrying on with normal day-to-day activities isn’t normal. Let me just repeat that:

 

IT’S. NOT. NORMAL. Don’t let anyone tell you that you are overreacting. Or that it’s a normal part of being a woman.

 

Unfortunately, “there is delay in diagnosis of between 7 and 10 years. This is due to girls and women normalizing symptoms as well as doctors normalizing symptoms when women do finally seek medical assistance. Early diagnosis and treatment reduce the long term impacts of Endometriosis and frequency of invasive treatments and fertility treatments. Raising awareness is the first step to reducing the delay in diagnosis across all age groups. Education about menstrual health, what is normal and what is not is vital in younger age groups to break the current cycle of delay in diagnosis and flow on affects for the next generation (Ballard, K. Lowtan, K. Wright, J. 2006 & Dessole, M. Benedetto Melis, G., Angioni, S., 2012)” (https://www.endometriosisaustralia.org).

 

I hope that one day, more open and honest discussions about periods can happen, and help is offered to girls at a much younger age. This March is Endometriosis Awareness Month, and I plan to be involved in this in any way that I can. We need to raise awareness of this chronic illness, so young girls like me don’t wait 10 years to get help.

 

If you look at my more recent Endo situation, this is where I am at:

 

My current varying symptoms include extreme pelvic pain, severe back pain between my hips (which gets far worse if I eat any gluten or stay seated for long periods of time). I get shooting pain down my legs, experience hot flushes, night sweats, anxiety and extreme fatigue. Add on to this more than occasional bouts of IBS, sore breasts, headaches, irregular bleeding and emotional fluctuations that I can never keep up with. I have suffered with these symptoms for over 15 years and not just when I have my period (if only it were that simple!). I have had two laparoscopies, my first when I was 20 and the Gyno ‘found nothing’. Fast forward 7 years to my second surgery, where not only was there Endo, it was so severe that my surgery was extended from the expected 30 minutes to almost two hours, where they burnt off lesions throughout the left side of my outer uterus lining, and cut out adhesions on the right side which had fused my bowel to my abdominal wall. I still remember seeing the doctors face –I wish I was a mind reader- I could have sworn he was surprised and almost felt ashamed that he had initially said to me: “there’s probably nothing wrong with you if nothing was found in your first laparoscopy”. Oh how wrong he was, and this was said to me by an Endometriosis specialist. In the almost two years since this surgery took place, my back pain, digestion troubles and fatigue have only increased. The one upside is I finally found a new and fantastic Gyno who has treated me and my Endo from every imaginable angle. I am now in a position where I am managing my pain with a combination of nerve-blocking medication, pain relieving suppositories (fun!), and being put on the FODMAP diet which eventually led to me finding out a huge trigger for my poor operated-on-bowel, was gluten.

 

So, aside from saying goodbye to three big loves of my life: pizza, pasta and bread, things could totally be worse, and I know right now I am doing ok, but tomorrow could be a totally different story. I have started my blog to start sharing my story, and help get word out there.

 

I am only one spokesperson for women with Endo, but I feel like I am not alone in saying most of the time, we just want to be understood and accepted, and our pain and suffering to be acknowledged appropriately. This March is Endometriosis Awareness Month, and I will be wearing yellow every day to show my support and involvement. 1 in 10 women have Endo- think about how many women you know. Chances are more than a few of them have been suffering in silence for a long time. I honestly believe that if we want things to change, for young girls to get diagnosed and cared for earlier, then it’s the responsibility of everyone, to recognise what Endo is, and what toll it takes on women all over the world. How will you show support for women with Endo this month or in the years ahead? What will you do differently?

 

There are so many resources and links with information online, but the other thing that can be really informative- is to ask us, the women with Endo the questions. We live with it every day, and when someone shows interest or concern, that’s one more person who is on their way to understanding and accepting and helping us see some change.

You can follow her blog, Finding Fortitude here.

Thank you for sharing your story, Gen. Keep shining your light. Here’s to pain-free days and deep-belly laughs.

#31 Days Of Endo ~ Reshma Maru

Day 8:)

Happy International Women’s Day.

We continue to share our stories and raise our voices as we #pressforprogress.

It’s difficult to tell the battle a woman is fighting by looking at her. Endo is an invisible force, it is tiny and mighty. It attacks from the inside out, Endo pain is something that all girls would love to live without.

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There is a resilience, a fire in her eyes, a desire to win that Reshma Maru has that lets you know that she is determined to beat Endo. She first shared with me her story in 2017.

My name is Reshma Maru, I am twenty-seven-years-old and I work in procurement for a furniture store. I smile when I see the face of a child – the innocence they show and their purity of heart. Joy fills my heart when I day-dream about holding my own child and cradling them close to me.

 

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I started my periods at the tender age of eleven. I would hear girls in schools saying that it is like a disease where if one touched a girl who had her periods it would spread, so I kept it hush from friends and even from my mother. Being the only girl brought up in an Indian family I didn’t have someone to confide in, the day that my mother found my bed sheets stained she was furious that I did not tell her I had started my periods. In the Indian culture, it is important to tell your mother so that she can explain to you that when you are on your periods you do not go to the temple or touch someone who is going. So many myths came together with this.

 

I went through years of painful periods that would last 7-8 days. Panadol was my best friend and without it, I would not last any of the days. I knew that, ahhh it is periods, they are always supposed to be painful, so it is normal.

 

The pain got worse when I was twenty-four years old. I would have the normal painful period but the pain would continue even after the periods were over. So two weeks down the line I said to myself, ‘This cannot be the period pain, it must be something I have eaten.’ I went to a general doctor and explained all my symptoms to him, and he said that it sounds like amoeba. He took a stool sample and said that he found traces of amoeba and that was a sigh of relief as I knew there are medicines to get rid of them. I was on medication and a few days after ovulation I was pain-free.

 

The next month came and I got painful periods and the same pain after the periods. This time I ignored it and took antibiotics for two weeks and voila I was back to normal. I just thought to myself that since the previous periods were painful I may have a less painful one next month. Come next month the pain was worse. I would get hot flashes, nausea, lack of appetite, and pain all over my abdomen especially my left side.

 

Since I had a medical cover at work I decided to go see a gynae and just to get things checked out as it may be a small issue, and besides since I wasn’t paying for it I didn’t have an excuse not to go. I got advise from fellow workmates on which gynae to go and see since they were using the same cover. The gynae advised me to do a blood test and a scan so that she could have a clear view of what was causing the pain. When she saw the scan report she looked at me and said ‘You have Endometriosis.’ At first, I was like ‘Huh? That is a long name to even pronounce, let alone spell.’

 

I took the prescribed medication and decided to google the sickness she had talked about. After the research, I concluded that it was a common disease so may be the Vissane that she had prescribed would cure it as the box read: specifically for Endometriosis. I took it for 6 months as I went for regular checks with the gynae and I was really really happy. Vissane suppresses your periods, so no periods = no pain for me.

 

I was three months away from my wedding and pleaded to the gynae to let me continue with the medication until my wedding and honeymoon were over. She agreed and said that I should get a baby and all these problems would disappear. I was happy that I was pain-free, able to work, plan my wedding, and run around.

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I actually ditched the contraceptives when I started gaining weight and getting very emotional almost every day. I started going to the gym to lose weight but after 3 sessions max and I could hardly keep up. I was always tired, my feet always hurt, my shoulders felt like someone was sitting on them, I would cry for no reason over the tinniest things. My husband would be like, ‘What is the matter? Be strong,’ and I would just look at him and just cry, and cry.

 

The next time my periods came, the painkillers did not work at all. I could feel a sharp pain like I was being stabbed on my left side, but nothing was working. I even went to work in all that pain as I waited for the painkiller to kick in. I was hoping to get distracted from the pain while I was working but that didn’t seem to help either. I rushed to my gynae and pleaded with her to do something about the pain. She injected me with stronger painkillers but nothing changed. Now helpless, at the end of my strength, I asked her, “Please just tell me anything else we can do because I don’t think I will last another day like this.” If I saw a knife that day I would have stabbed myself just to remove whatever it was that was causing the pain, as I knew exactly where it was.

 

She advised that I be admitted right away for a Laparoscopic surgery. Without knowing the details I was ready to go through it just to get out of this hell. In the evening as I was prepping myself for surgery, I started thinking ‘What is this I have agreed to do?’ but I prayed all will be well and went in for it. A surgery that was to take 2 hours ended up taking 4 hours. I came out of surgery with a numb tummy and no pain, and I said ‘Wow! I like this feeling.’

 

The pain started after I was out of hospital, I was constipated, dealing with pain  from the surgery itself, dealing with a dry throat caused by the tube they insert down your throat during the surgery, extremely emotional and hating on those who didn’t come see me in hospital including a best friend who I decided to let go of. I went back to the gynae for my report and to ask why the surgery took so long and she explained that I had a normal cyst and inside it there was an endo cyst that was growing, both the cysts measured at 5.5cm. These were on the left ovary therefore causing the excruciating pain. They were removed but since they were on my ovary the top tissues had to be removed as well, this would prolong the healing time.

 

Post-surgery, I am still struggling to join this diet plan that endo patients are asked to follow but my workmates give me support and also join me in eating right. I do not want to lose a job or give up on life because of this. Believe me, it is so hard, I lived for food and now I get told do not eat this or that. It is a struggle to find organic food, when you do find some you are too weak to cook it for yourself.

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But believe me nothing is worth your health. The bills that you get with medication and surgery are more expensive than just eating right and taking care of yourself. I am now hearing about different foods or herbal meds and I’m willing to give them a try.

 

This has really changed me in many ways – I am closer to God more than ever, thinking of him every day – I am more positive and really willing to help someone else through this because NOTHING is possible without the support. When you are left alone your negative thoughts echo within. Listening to someone vent is good enough for me because we all, at one point or another , want to do that.

 

I always want to help and be there for anyone going through this as no one understands your pain like a fellow endo-sister. I believe this will be a thing of the past but this can only happen if we create awareness and conduct research on what works or doesn’t work for each other.

 

What I always keep in mind is that God gives the toughest battles to those he loves the most. Let’s not give up. Always be there for someone whenever you can because time is short, let’s not run out of it!

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courtesy yesofcorza.com

My favorite flower is a black rose as it is unique and rare to find just like you!!

You can connect with Reshma on Facebook and Instagram.

 

Thank you for sharing your story with us, Reshma! We pray that 2018 will be a better year. Here’s to health and many moments that make you smile.

#31 Days Of Endo ~ Trish Barasa (Part 1)

Day 7 🙂

Oh, that our voices will be heard. We hope that policymakers, health care providers and the society at large will hear our cry and help us.

Endometriosis is real! It is as real as the air that we breathe. Trish Barasa gives us a glimpse of her life as an Endowarrior. The highs, lows, and oh-my-goodness-not-this-too.

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Trish is a strong and deliberate warrior. She is fighting much more than Endometriosis.

My name is Teresa Barasa, and I am an endo- survivor, and warrior. My friends call me Trish. I am 37 years old and a loving mother of 2 children. I am a socio-economist by profession currently a public policy scholar at the Strathmore business graduate school. I am a free spirit who finds gratification in serving humanity and impacting lives around me. It gives me a deep sense of satisfaction knowing that I have in my limited human capacity uplifted a soul and lit another’s candle. I smile at the slightest ray of light and break into laughter in sparks. Conversely, a dying candle saddens me, whether my own or another’s. Darkness leaves me desolate and impotent.

 

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I had an early menarche, judging from my classmates, relatives, and playmates. I vividly recount of the events: I had just turned 12, and this particular evening was the eve of my uncle’s wedding. Relatives from upcountry had convened in our house for the event. To my awe and dismay, I woke up soaked in blood. My morning was wrecked. All the home science lessons on menstruation vanished into thin air in my current reality- and so my day began. As fate would have it, I continued to stain myself at the wedding bringing my predicament to the attention of female relatives who took it up to clean me up and improvised a pad for me with cotton wool. They wittingly introduced me to the birds and the bees story. It never stopped flowing for a whole week staining all through – I tied a sweater around my waist to conceal stains.

 

From the word go it was staining and painful. And it has never disappointed since – only I became better with time in treating the pain using non-steroidal-anti-inflammatories (NSAIDs) and had access to better pads. A quarter a century later, my cycle can best be described as shorter than the typical ‘moon phase’ of 28 days, sometimes as short as 2 weeks with a heavy flow that on various occasion stretches to 14 days. A friend jokingly refers to this phenomenon as the ‘long rains’. I must confess I sometimes can relate to the bleeding lady who touched the hem of Christ’s garment. Strangely, this is my normal for I know no better, when it comes to my menstrual cycle.

At the age of 25, an acute attack of gastritis brought me to the verge of a mental breakdown from excruciating pain, prompting me to crawl to the Nairobi hospital ER. I brought everything to a standstill. I was in a lot of pain and I refused for anyone to touch me even the doctors who should be treating me. I was eventually sedated and admitted for extreme abdominal pain. A team of doctors was setup to attend to me who included a Gastroenterologist, GP, Gynecologist and Psychologist for reasons that I was manifesting mental symptoms. I had had several painful abdomen moments before but this one had literally run off with the red line. On evaluation, I was diagnosed with peptic ulcers from an endoscopy and a pelvic scan report showing tissue in the pouch of Douglas (POD). The findings from the pelvic scan led to a scheduled laparoscopy. The gynecologist, a renowned specialist in the female reproductive system explained the need for what he referred to as a non-invasive surgery for the diagnosis of a condition he had clinically diagnosed me for – endometriosis. My first encounter with a condition that has since redefined my life. Procedurally, I had surgery. This was followed by a biopsy which proved that the tissue excised from the POD and deposits from the region near my rectum was indeed endometrial tissue. 

 

This marked the beginning of my journey of living with endometriosis. First was the diagnostic surgery that also doubled up as a remedy for endometriosis through ablation of endometrial tissue that was visible. I was thereafter presented with treatment options that were mainly hormonal for the suppression of estrogen.

 

There is no cure for endometriosis, at least not yet. But there is a choice of treatment plans that different doctors will propose depending on the severity of your endometriosis, affected organs, and expectations to alleviate or improve the situation. For me, the pain was unbearable and the effect on my rectum, bladder and related systems was inexplicable. The thing about endometriosis is the deposits that are wrongly placed will respond to the follicular and luteal phase and shed off in their misplaced locations just like the endometrial tissue in the uterine cavity: these as responsible hormones fluctuate along with the menstrual cycle. The result is a host of abnormalities, mainly inflammation, pain, and infections. 

 

I have suffered menstrual symptoms (painful cramps, long menses, short cycles, bleeding and spotting in between periods), urinary symptoms (urinary tract infections, painful urination, and incontinence), digestive symptoms (bloating, constipation and diarrhea), pelvic inflammatory diseases, severe migraines, musculoskeletal symptoms, and chronic fatigue. For these, the doctor proposed treatment through the hormonal implant Zoladex for 6 months. Zoladex is a gonadotropin-releasing hormone agonist (GnRH) which is used in the management of endometriosis by both alleviating pains and reducing endometrial tissue. Zoladex acts by suppressing the production of estrogen thereby reducing the formation of the endometrial lesions consequently the pain. Zoladex implants are given through injections that are administered one in a month. Besides Zoladex, I have used Depo-Provera for a year, combined oral contraceptives and other related medications to suppress estrogen.

 

To date, I still contend that Zoladex treatment is but a necessary evil. I say this because I suffered the drug’s worst side-effects. For 6 months, High blood pressure, headaches, hot flashes, mood changes, low libido, breast tenderness, constipation, nausea, insomnia and vaginal dryness became the order of the day. As I counted down the 6 injections, my day to day abilities were suffering the side effects. Note, endometriosis in its very nature affects every other part of your system; these effects are compounded by the medication used to manage pain, bleeding, and to treat the infection or improve the digestive processes. 

 

Pelvic pain is a common symptom but many others may occur depending on the site of the deposits. The pelvic pain sometimes can be as a result of inflammation processes consequently infections from the endometrial abnormalities. I am said to have a retroverted uterus. Not sure if this is endo- related but it exerts pressure on organs in my pelvis.  

 

With deposits occurring at the POD and spread within the rectal and bladder region, my pelvic pain was accompanied by constipation and urinary problems. When hardest hit by constipation, I have found myself starving myself so that I don’t have anything to excrete because defecation is a nightmare. As gross as this may sound, constipation can be so severe resulting in heavy bleeding that needs a pad to the rectum and time to heal. As a subsequent to constipation is diarrhea leaving one depleted and dehydrated. In addition, is bloating arising from the digestive abnormalities which can be very painful. Right next to the rectum is the bladder which is equally affected on a regular basis mainly through urinary tract infections (UTI). From experience, I can almost predict a UTI even before it develops.

 

Against every dolorimeter of pain, against every end of the road, against every recurring symptom, again every escalating situation has been a blow on my mental status. Perhaps dead brain cells. Dealing with ovarian cysts is another hurdle every woman with endometriosis has to navigate. I have personally had an operation from torsion and still have to deal with the menacing cysts which affect the flow, pain, and infection.

 

You can read part 2 of Trish’s story here.

Trish, I pray that you will find strength for each new day and healing. May you touch the hem of the garment.

#31 Days Of Endo ~ Kawira Rweria

Day 6 🙂

Invisible pain results in invisible battles. Behind the smiles are scars that cannot be seen, unless you use a laparoscope.

Kawira Rweria is a bubbly warrior, who I e-met (can we take a moment and thank the Lord for the internet) last year at one of her lowest moments. Seeing her smile is such a joy.

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Endo is a thief, but we are slowly but surely reclaiming what it has stolen from us.

My name is Kawira Rweria and I am 32 years old. I work as a customer care officer. Serving God and people makes me happy.

 

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Where it all begun

I started my periods at the age of ofurteen. I was confused but still excited because in my thinking I was finally a young woman. I was all grown and in the same level with all of my agemates who had started their menses way before I had. After two months, my periods disappeared for over 6 months. When they resumed they were heavy and a little painful.
When I was nineteen the pain became worse. I was in pain during ovulation, and during the periods the pain would have me lying in fetal position on the floor. I was taken to the hospital and I was told its normal for some girls to have painful periods and that the pain would go away when I am older or when I get a baby. (I am rolling my eyes right now.)
Finally,  a diagnosis
Fast forward to 2017 when I first heard the name Endometriosis. ‘Endo what?’ I thought to myself.
I was diagnosed with stage 4 Endometriosis last year. After the surgery I was put on on Visanne, the side effects were worse than I expected and I was discontinued. I was then put on Yasmin. After my second/third operation in the same year, i was put on Zoladex (code word for medically induced menopause.)
The Challenges
Endo has robbed me of my happiness, my energy due to the chronic fatigue, I have lost a few friends who do not understand why I can’t hang out or see them when they want. I have missed work a couple of times due to pain. I am mostly physically, mentally and emotionally drained by the pain.
I have had to change my diet, I cut out all dairy products, I struggled giving up wheat, but I have recently made progress (doing a happy dance). Red meat, however, is my undoing (napenda nyama sana).
My biggest challenge is lack of energy, fatigue, the constant pelvic pain not to mention the side effects of the hormonal drugs.
The lessons I have picked along the way
I have learned to be strong because being strong is the only option I have. I have learned to mask my pain and put a smile. I have put all my trust in God.
My word of encouragement to women with endo is, You are not alone! We are all here together for each other. If you are out there alone and in pain, please join the Endometriosis Foundation of Kenya WhatsApp group or the Facebook group.
The thorns present in the rose bushes do not hinder the roses from flowering and becoming beautiful.
Finally, I tend to think of endo in the Bible context as it is in the story of Job. God does not give you a burden too hard to bear, thus we will overcome this. We are warriors.
Kawira, thank you for sharing your story with us. May your joy continue to bubble within and may you bloom despite the thorns.

#31 Days of Endo ~ Hadassa Trip

Day 5 🙂

It is always uplifting to read the stories of other Endo warriors who are braving through life, shining their lights and lifting others up.

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Editah Hadassa Trip is the founder of Waiting Wombs trust. She is walking with women whose wombs are waiting and sharing a message of hope.

She first shared her story with me in 2017.

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After our grand wedding in 2007, I wasn’t keen on conceiving in the first 3 years. We were on honeymoon so I didn’t see any hurry. I had also lost my sister during child birth and it crushed me.

 

Fast forward to the fourth year, I experienced horrible cramps, and visited a doctor who treated me for cysts. That was the beginning of our waiting journey, and the medication process. I was put on strong hormonal medication that nearly killed me, they had to be flushed out of my system fast.

 

I experienced my first “societal punch” when someone asked me to try different positions and stop wasting time. (I never lack sober responses for such questions – trust me .)

 

We kept trying, started visiting doctors who confirmed that all was well with us.
In 2010, I had a laparoscopic surgery where the doctor removed 12 fibroids and 6 cysts. I remember asking him how so many growths could be in one petite person. I recovered and went back to my normal routine.

 

Later, a pal gave me some herbal medication that worked for her after a long waiting period. This totally affected me and resulted in fresh cysts, said the doc. Reversing the effect was a painful process.

 

In 2014, I experienced another flare of pain and ended up in the theatre again, this time for an emergency open surgery. I was diagnosed with severe Endometriosis. I was then put on the those jabs that drive you straight to menopause (at least some of us know what menopause feels like, lol!) How do our mothers handle hot flushes?
I remember one day fanning myself ( July) and a client asked me ” Madam, ni kushuta ama joto?” (Madam, are you feeling hot or did someone fart?) lol!!
Anyway, I faithfully took the medication for 6 months. This time I was confident that I had recovered and my twins would come any moment – those twins are still coming :).

 

I have since gone for six Hysterosalpingograms which is an X-Ray to see the inside of the uterus and Fallopian tubes. I’m not doing it again because the last one left me limping. I’ve been on crazy medication, used horrible herbs, and had uncomfortable procedures. At some point my hubby and I promised ourselves that we’d only visit doctors if we must. Oh, how I hate hospitals!!

 

PREGNANCY KITS

I need to mention how uncomfortable I feel buying the pregnancy kits. Knowing that it could be another 200 shillings washed down the drain. I know you understand that feeling only too well. There’s a time I was sure that the babies had at least settled in (Dr. Google can be a monster eish!). I took the tests thrice just because I wasn’t prepared for another negative result. I even tried putting on a different set of specs just in case my eyes were a problem. Call it “honest deception”. I think I cried for an hour or so after finally accepting the results. My eyes were so swollen the next day and I had to go to work. I survived .

 

Anytime I was put on hormonal medication e.g Clomid, my reaction was extreme. In one instance, I developed severe Ovarian Hyperstimulation Syndrome. I react to everything! Literally!

 

THE OPINIONS OF OTHERS

Two months ago I was upcountry. An old lady relative approached me and said ” I saw the cause of your childlessness in a vision. Give me some money and let me pray for you “. Thank God my husband was there who politely told her off.

 

Some of the uncomfortable comments I have faced as I wait are:
“What are you still waiting for? ”
“You are pretending to be happy yet you aren’t.”
“Why are you wasting your husband?”
“You keep postponing this issue thinking you’ll be young forever- shida yako!”

 

Why am I sharing this? Why am I still hopeful and waiting? Does it mean that I don’t have low moments? No. I do. I am human and a woman for this matter.
We have however accepted that children come from God. See the Bible cases where ” The Lord opened wombs and conception occurred”? I cling onto such promises. I have faith that my conception will be natural because there’s God in heaven who can do the impossible.
Doctors can talk about infertility or barrenness but I don’t buy that, I am a waiting womb. Adoption is an option for us whether our Samuel comes or not. And as we wait, we’ll make the best childless uncle and auntie by God’s grace.

 

Should The Lord in His wisdom decide to withhold this blessing from us, we’ll still trust and serve Him. Doesn’t He have good plans for us? He’ll provide the strength needed to hang on.

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PARTING SHOT

Let’s be encouraged dear ones. Don’t allow your current situation to define you. You are special, you are loved.

 

There may be pressure from within, from in-laws, spouses ,society and all, hang on. Even Peninah could only do so much until The Lord remembered Hannah.

If you know a woman who is waiting on the Lord for a child, you can refer her to Waiting Wombs for more information. You can connect with Hadassa directly on Facebook.

Thank you for sharing your story with us, Hadassa, may God continue to grant you grace and strength to hang on and to hold other women’s hands. May He remember you. Keep shining!

#31 Days Of Endo ~ Patricia Roy

Day 4:)

Endometriosis is real. It is not a fictional pain, it is real and it affects 1 in 10 women. Removing one’s uterus is not a cure for Endometriosis, Patricia Roy shares with us her story of pain, courage, and hope. She first shared her story with me in 2017.

She is based in the United States and she supports her fellow endo warriors and shares an array of home remedies on her social media sites.
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Hi! My name is Patricia and I am 41 years old. My period started at the age of 14, and I couldn’t wait to start my period. It meant I was a woman in my eyes. The period issues began when I was 15 years old. My mom took me to my sisters’ gyno because my sister had endometriosis and I was showing symptoms. After I saw the gyno he did surgery and I was diagnosed with endometriosis at 16.

When I was first diagnosed I didn’t worry about it, because it wasn’t severe. But I was put on birth control to help with my periods. When the pain started increasing I was put on Depo provera injections. Those didn’t work, so I was put on Lupron and that also did not help. I had many surgeries to clean out the endometriosis and at 21 it was decided a full hysterectomy would be best for stage 4 endo. I thought it would be a cure, but it was not a cure.

I do regret the hysterectomy. Because it’s not a cure. And I always wanted a baby if my own. It was a very dark time in my life when I had my hysterectomy, my writing helped me cope.

 

This disease changed my life in many ways. I was unable to finish college because I was too sick. I worked off and on but eventually I had to be put on disability. Emotionally my journey with this illness has caused me a lot of anxiety and panic attacks.

I have had 32 surgeries so far and I currently have endo on my bladder and cysts all over my pelvis. I started a support group on facebook called Sisters in Yellow.

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I currently started writing for a magazine called  Streetfashion, I am the beauty editor.I always wanted to be a writer since I was little. I write poetry and song lyrics. My writing has gotten me through a lot of dark times, dealing with this disease.

My advice to other women is to take it one day at a time, and to find a hobby that takes your mind off the pain. I’ve also come across a lot of pain methods that are natural and can be done in the comfort of your home. I have a beauty page where I share home pain methods.

My favorite flowers are Daisy or Calalily.

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The beautiful thing about Patricia is that she has not let Endo dull her sparkle. 32 surgeries later, she still has a smile on her face and light to shine to the rest of the world.

Thank you for sharing with us, Patricia. Your story is an encouragement to many sisters. Keep writing and shining!

#31 Days Of Endo ~ Elsie Wandera

Pain changes you, and sometimes it births within you a desire to be the change that you want to see. That is the story of Elsie Wandera, our third Endo warrior on this seriesSimple Photo Spring Quote Instagram Post

 

 

Elsie is strong, driven, resilient and passionate. After struggling to get a diagnosis, she chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about and to support the women suffering from Endometriosis. She is the founder of the Endometriosis Foundation of Kenya.

She first shared her story with me in 2017.

My name is Elsie Wandera and I am 36yrs old. I am a trained Journalist & recently graduated with a degree in Communication – Advertising major from Daystar University. I have experience in Personal Administration and I’ve worked in a marketing capacity for 2 FMCGs. I am also the founder of Endometriosis Foundation of Kenya focusing on raising awareness and advocacy on Endometriosis. I am also the founder of My Heart Scripted where we run a 10-week experience called Purity & Purpose, that helps women pursue purity and unlock purpose.

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The thing that makes me smile is knowing that I have played my part in making the world a better place and seeing other people smile thus.

 

Where it all begun

I started my periods when I was in primary school. I sincerely thought I was dying, I remember I crying in the shower because I could see this brownish flow but I could not tell where it was coming from. My mom then told me it was okay. I remember I had to buy pads, that was exciting as a girl, I even remember how they smelt then 🙂.

 

Managing the pain

The pain begun when I was in high school around the age of 14 or 15. I remember I experienced such bad pain that I had to be in the clinic during the  days I was on my periods. These were formational years for me and I thought there was something wrong with me. I continued the journey with the knowledge that periods are painful and I dreaded the days.

 

Diagnosis and treatment

I was finally diagnosed with Endometriosis in 2006 through a laparoscopic procedure, the Obs/Gyn simplified it for me by telling me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding, it was by God’s grace that he found it because it was one of the things that contributed to the pain.

 

Upon diagnosis, I was put on a hormonal therapy treatment. This was administered subcutaneously every 28 days below the navel line for 6 months. It had the worst side-effects for me among them: headaches, hot flashes, breast tenderness, nausea & vaginal dryness. Once I completed the dose, the effects of endometriosis which include: chronic pelvic pain, painful bowel movement, painful sex & heavy bleeding became worse. I recall lying in an ER calling my Obs/Gyn and asking him amidst tears why it is back. That was when he revealed that it has no known cure and is recurring in nature. What’s interesting is that he requested me to consider getting pregnant soon (I was 26 then) because one of the effects it contributes to is infertility among women. However, this is not a solution, it is a Band-Aid for 9-months that does not guarantee that the condition will not relapse.

 

At 34, I had to go through another laparoscopic procedure where the they removed another ovarian cyst and the adhesions around my uterus. This was interesting because I did not know that surgeons had specific parts of the body they could cut and others they could not.file

 

Endometriosis has affected many aspects of my life 

 

Physically

The condition caused physical pain and as a result I dreaded my period and yet it is a gift from God that should be enjoyed by every woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation, sometimes I called it “the egg-is-moving day.” I was dependent on pain medication and anticipated pain every month which is not the way any woman should live their life. I also stopped eating as the period approached due to the nausea and difficulty passing long and short calls.

 

Emotionally

It was draining because I had negative thoughts and more importantly, because of the research around the condition and what one doctor told me, I knew I would never conceive. At some point I thought it was God punishing me for a life I’d lived carelessly before.

 

Socially

I was always uncomfortable because I needed to explain myself and why I was going through crippling pain. I was conscious and limited in dressing comfortably because for me it meant sagging clothes because of the physical discomfort during my period and the heavy flow. God forbid I’d stain a seat when the flow opened after a bubble escaped, those were messy days.

 

Professionally

I dreaded having to explain my colleagues and leaders that once every month I’d be disabled and sometimes unable to come to the office. It’s interesting that on those days people would still expect me to deliver my tasks and it would seem like it is not as serious as other physical ailments. But over all I never had an issue especially after I learned what the condition was and that it had a name.

 

I have made changes in my lifestyle

The biggest changes I had to make are around diet and physical exercise because I understood the disease and what it would require of me. I cut down on gluten, wheat, dairy and red meats and increased intake of greens, super foods & supplements to ensure I was enriching my nutritional value. Water intake also is my highest priority because it is a natural cleanser.

 

My current challenges

I think sticking to the diet and relapsing to eating unhealthy foods is the greatest struggle. I’ve learned my body enough to know when I’m craving foods, then I try to compensate with a healthy choice.

 

Learnings from the journey and words of wisdom to other women suffering

I think my greatest learning was understanding that my body is different from another woman and I have to prioritize my health, because no one else will if I neglect it’s cry.

 

We also need support from the world and by telling my story I’ve encouraged another woman to know she is not alone. Therefore, tell your family and friends once you are diagnosed and stop self-medicating and seek professional advise because the body was not built to constantly rely on medication. We also need support from government, employers and medical industry for the sake of all the women in finding a cure and supporting them in every way we can because it takes away our most reproductive years of our lives which we cannot relive.

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Every woman’s pain is valid and if doesn’t matter that you don’t understand it matters that you stand with her as it is not easy to bear.

You can connect with Elsie on Facebook and join The Endometriosis Foundation of Kenya  Facebook group.

Follow her on Instagram and Twitter.

Thank you, Elsie, for sharing your story with us. Your voice matters and your labor is not in vain. Keep blazing!

 

#31 Days Of Endo ~ Amina Mohammed

Day 2 of the awareness month 🙂 I hope you are all keeping well.
Our second Endo warrior is the graceful Amina Mohammed.  I met Amina for the first time late last year during a Yellow Endo Flower meet up. She is a sweet spirited fighter.20180302_142504_0001
My name is Amina, I am 27 years old and an early years teacher. Working with kids and being near the sea bring me joy.
Where it all began
My periods started when I was 12 years old. From the first day I had painful cramps which were accompanied by throwing up and a running stomach.
I remember being house bound for the first couple of days of my cycle because of the pain. I always had an old bucket for throwing up next to me, when it got too much, I just camped in the bathroom, with the cold floor easing my pain. All this time I knew that periods are painful and what I was going through was normal.
In primary school, I heard a story that gave me some hope; people said that if you have painful periods, when it’s time to give birth your labour process will be painless.
When I was 19, I started getting constant sharp, stabbing pains in my abdomen, that’s when I knew something was wrong. I was referred to a gynae and she sent me for a scan and when the results came out she told me I had Adenomyosis and that I would have to be put in to early menopause. Imagine the trauma my 19 year old self felt, the first time I go to a gynae and she says I have a strange sounding disease and the treatment is menopause!
After a while I decided to seek a second opinion and that’s when I was diagnosed with Endometriosis. The new doctor explained it well and I had my laparoscopy  where he found many endo lesions on the left side of my pelvic wall. The recovery went well until I started Zoladex injections, the side effects were awful: hot flushes, mood swings, and depression. Eventually I finished the treatment and I finally got some relief.
The thief within
Endometriosis has stolen my energy and I am constantly fatigued to the point that I have to force myself to get out of bed.
Alone
Endo made me feel so alone because I felt that no one understood what I was going through. Fortunately, last year I found a very supportive group of ladies in Endo Sisters East Africa. It was such a relief to finally meet people who understand endo and get me.
My struggles
I also struggle with bloating when I eat the wrong things, recently I bumped into a person I had not seen in years and they thought I was pregnant.
I am working on the endo diet, I’ve given up dairy and red meat but my biggest struggle is wheat – I just can’t seem to give up bread and chapati.
My lessons
I’ve learnt that no matter what, somehow I can get through the pain and dark times. It’s also really comforting to know that I am not alone, a support group is really important. Something that I learnt from you is to be my biggest advocate, that is still a work in progress but it is awesome advice.
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My favourite flower is a rose because I believe that the thorns represent the struggles we go through and despite the thorns, the rose still blooms and becomes beautiful.
Thank you for sharing your story with us, Amina. Keep fighting and inspiring.
You can read the first story in this series here.

#31 Days of Endo ~ Nurah Palesa

Happy new month everybody!

March is here!!

To start us off in this series, I would like to introduce you to Nurah Palesa.

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Queen  Nurah is an endo warrior based in Kenya, she shared her story with me for the first time in 2017.

 

I am Queen Nurah, and at the age of 25 I have lived with Endometriosis for 15 years now. I run on happiness. There is no one thing that makes me happy, a combination of the things that pull my heart strings is how I live. As for my profession, let’s just say that I am a Storyteller and Poet.

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Where it all begun

Before I turned 10, the year that pain became the filter to which I would see life, I was eagerly awaiting my periods. I looked forward to it like a boy would await his ceremonial rites of passage. I wanted to see the drops of blood on my underwear and have a crazy happy dance celebrating my new life as a woman.

 

The pain began immediately I started my periods. I was sitting in the back of the class, talking as usual and ignoring what the teacher was writing on the board. Then my insides began attacking me. It felt like someone had run a knife across my abdomen over and over again. I shakily put up my hand and asked if I could go to the bathroom.

 

When I got into the cubicle, something told me to check my underwear and hoorah I had blood. But I couldn’t do the crazy happy dance, not with the pain that I was feeling.

 

I remember going to one of the “nice” female teachers and telling her I got my period and that I was in intense pain. She was nice, she showed me how to put a pad on and for the pain she said that it was normal and hot water would help. “Normal? Are you crazy, I feel like I’m dying!” I thought to myself as I gave her a look that showed I thought she was crazy.

 

Maybe two hours later, I don’t exactly remember, my mother was called because now I was wailing and “causing a scene”. Hehehe, causing a scene. At the end of the day my mom gave me Syndol. Yep, Syndol. That confirmed my suspicion that the pain I had was not normal and for the next 7 days I suffered.

 

Managing the pain

For 13 years I was subjected to excruciating pain before my periods, during my periods and 3 days after my periods. In total I was in pain 15 days out of the month.

I ended up having a cocktail of painkillers in my bags. Here is the list with what I started to what I take now:

  • Syndol (4-6 pills in an hour/day)
  • Betapyn (5-6)
  • Postan (10)
  • Brufen (10)
  • Buscopan (10-12)
  • Buscopan plus (it would land in my stomach and I would throw up immediately)
  • iBoprufen (40 mg 6, 80mg 7-8)
  • Vykadin (6)
  • And now I’m on tramadol 100mg and when the pain gets really bad I go for the shot.

And while I was on these pain meds I sometimes found that mixing them would help. And when I say help, I mean level the pain to a degree that I could function and not snap at people.

 

The pain haze of life is amazing. It changes how you look at everything and how you react. Physical pain makes life 300 times worse. Well for me. Someone else could be different. I had the worst mood swings, had a short fuse and basically I would just want to cry and be alone most of the time. I am generally a nice, gentle happy Queen, but you don’t want to make me mad when I am in pain.

 

Oh wait, did I forgot to mention that I would get high off the pain meds, lol aaaand that I was a heavy alcohol drinker. For 7 good years. The combination of alcohol and a cocktail of pain meds made the pain bearable.

 

I remember when I joined uni and my girlfriends would watch me pack my clutch bag with tampons and meds (3 strips of 10 so basically 30 pills) and they would ask if I was ok. Little did they know that I would have gone through 2 of the strips by midnight.

 

I would literally get high just to escape the pain.

 

When I was 22, fresh out of rehab (because others thought that alcohol was the problem) the pain kicked up a notch.

 

Finally, I got a diagnosis

 

Lower back pain and shoulder pain had kicked in, and I needed to know that there was a name for what I was going through. I went to see a gynaecologist and he diagnosed me with Endometriosis. I thought that finally I can get rid of the pain for good now that it’s an actual disease.

 

I went online and decided to learn all I could about my condition. That’s the type of person I am, I read and research on topics that are of interest to me. So I did what I do best; gather intel.

 

I found out that foods (which I had always known, I’m very strict with what I eat) contributed to the pain levels and there was a diet I could start. Eh….that diet did not work. In fact I ended up increasing my pain and losing even more weight.As for the endo diet, which is vegetarian I really tried. My body just didn’t accept it. And recently I discovered that diets don’t work for everyone, our blood types play a big role in the foods we need and as an O+ I need meat. I’m sticking to white meat.

 

So again I run around for another year looking for a solution and I found one. Or so I thought. I went through a Laparoscopy where The Gynaecologist lasered the extra endometrium tissue that covered my ovaries and fallopian tubes and he put a Mirena Coil so that my fertility wouldn’t be compromised. I had stage 4 of Endo at this point.

 

Relief at last

 

For the first time in 13 years I had no pain.

 

I loved my life; a zeal for it (which I still have) was born. You know when someone tells you to live life to the fullest and do what you want to do and wave your hands in the air like you don’t care?? Lol, yeah I did that for 3 good months before the pain came back.

 

Back to reality

 

As I write this I have the worst headache ever and my back and shoulders have decided to kick into level 400. The last two days have been brutal because I am ovulating and I can feel the damn egg travelling.

 

I could change my diet again or find some radical something that will help “ease or get rid of” the pain, maybe even look at the spiritual aspects of it, but my reality is that I am meant to have this pain. I’m just supposed to rise above it and live life to the fullest and that’s not an easy task.

 

Yoga helps me. And meditation. And maybe some teas here and there. Lemon, ginger and honey is amazing. I generally try and avoid junk and fast foods and sodas. I’ve been on a general healthy diet from the word go. My mom has always been conscious about food.

 

Endo and Family

My family is very open with each other; my mom and sister also have endo and my brother was told early on about our periods. The extended family is a whole different story. I like avoiding them as they disturb my positive energy fields.

 

I would love a whole football team of children lol.

 

Endo is genetic, my mom and I traced it back to her grandmother (her dads mom) so for me it doesn’t really matter if I have a daughter or son, I’m going to have to tell them asap about endo. And what they can do from the word go.

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To my queens and princesses I agree it is so not fair that we endure this pain.

Search for your solutions and remedies. Don’t let anyone stop you. 

However do not forget to live life to the fullest. Do what makes you happy; love yourself and play in the rain.

Oh and please be kind to your sister queen / princess. Seriously, we women can be brutal to each other and it’s about time we stopped.

You can check out Nurah’s online home here.

Follow her on Twitter and Instagram.

Thank you Nurah for sharing your story with us. Keep fighting, shining and dazzling.

 

Bloom

“It is well” is at the tail end of things that I like to hear in times of turmoil. It is a phrase that I heard in the gusts of pain and wondered how anyone could conclude that what felt like a near death experience was something to talk about on a positive note.

10 years ago as I writhed in pain, it was not well. My body was not well, my mind was not well, and, I was not well. Everything hurt; passing urine, bowel movements, ovulating and menstruating were all accompanied by pain. I hated the journey, and I didn’t have good things to say about life. I was drowning on dry land. A few months later, I began my journey to get a diagnosis, which changed my life even more. Endometriosis is a silent, seemingly subtle thief, that lurks in the night at first, and then becomes brash as it matures and steals unashamedly in broad daylight. The pain that I had been battling over the years was all linked to the painful and heavy periods but I had no idea.

Pain is a very good teacher, thankfully we do not all have to attend its classes, especially if we have other people to teach us. My experience through pain and life change bore a desire to teach what I wish I knew as a teenage girl. One year ago, I decided to put the lessons into a book.

Bloom is here

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I am stoked that it is a reality, Bloom is a product of tears, surgeries, questions, countless medications, and a desire to be the change that I want to see.

Bloom is your practical guide for your period journey. It describes how a normal period should look and feel like, it explores the sanitary product options, healthy practices that every female should employ and teaches girls and women how to keep a period diary, the different factors that they should look out for and it includes a one year period diary.

Keeping a period diary over the last couple of years has revolutionized my life. I am now more self-aware, able to identify patterns in my cycle, and kinder to myself, there is a kindness that stems from understanding. I am able to hear my body whisper before it forces me to lay down and listen to the opera of its screams.

Bloom is Ksh 500/=, to purchase it in Nairobi please contact Rosemary via 0731224223. To purchase in Mombasa please contact me via 0746622833 or yellowendoflower@gmail.com.

When you look at a rose from the top, it is difficult to see the thorns beneath the blossomed petals. Sometimes the exterior appearances make people doubt the pain, but just like the sting of the thorn is very real so is the invisible pain that has somehow been branded as normal.

Through the years I have learned to bloom despite the thorns.

Endo Prayers: I Need You

Dear Lord,

I need you.

There are so many things that I could say, but my words fail me. The weight of my heart is weighing me down. The words unspoken, sap my strength. You see the cries of my heart even before I mouth them. You know all things, you see all things, you are able to do ALL things.

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Lord, I ask you to help me feel you even in this state of being overwhelmed. As I feel like it’s me against the world: I stare at the pain, hospital bills, the societal expectations, my own expectations of myself and I feel weak. Unable to move.

You see the battle within, the fight of my life to try and stay afloat when I feel like a boulder in the deep, wallowing in the blues.

Wrap me in your arms. Remind me of your promises. Speak to me again.

Help those who feel like me, help them know that they are not alone.

In Jesus name, I pray and believe,

Amen

 

Energy Forecasting With Endometriosis

There are days I have the energy to change the world and other days that I want to put the world on pause and sleep. The latter is especially when Aunty Flo is in town. I usually have no motivation to do anything. I just want to sleep, but life, oh life must go on.

Fatigue is like a leech that sucks the life out of you. Sometimes I think that I am draining more than just blood; my mental energy is usually at an all-time low, and the desire to do things that I normally would is at zero.

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One day in December I woke up running on reserves and on that day a simple thing like wearing earrings felt like so much work. A few years ago, this would have seemed so strange and out of character for me, now it is (almost) a non-issue. After I had children, I stopped wearing small earrings, to reduce the items that they could choke on, I miss how light and pretty they were. Now, when I do wear earrings, I wear big ones, that tend to make me feel like I am lifting weights using my earlobes. God forbid they get stuck on something, or better still, my Ky yanks them.

As I am more self-aware and seeing the pattern in my life, I am learning to plan ahead and forecast my energy. There are days that I have energy coursing through my veins and those are the days that I write books and put things in order, and there are other days that I have to access my reserves to try and make it through the day. Especially when Auntie Flo is in town, she has a way of depleting my energy even before it comes to the surface.

My energy graph would be high when I am not on my period or close to my period and (almost) non-existent when I am on my period. During those days I only do what is absolutely necessary, the funnel I use to decide is pretty small, so doing my hair and wearing earrings seem like too much work.

For these days I plan ahead to have help, especially with the girls, I sleep, oh, I sleep, this is my current symptom of Endometriosis, a wave of sleep that will not go until I enter bed for a couple of hours. I (try to) eat well, so as to keep my energy up and avoid constipation, Auntie Flo and constipation make for a horrible duo. I do my hair a few days before to avoid walking around looking like I came in to close contact with high voltage and wear simple outfits that do not need matching or ironing, long live dresses. I think about my meal plan in advance, otherwise, we will eat the same thing every day, because the energy is limited to surviving. Anything that needs order and analytical skills is avoided during this time.

I am grateful for a good support system, my husband and daughters are so understanding when it comes to these couple of days. I desire to increase my energy levels so that is a work in progress, but good planning is definately working in my favor.

 

 

 

 

Post-Valentines Love

Aunty Flo ruined red for me, she was such a drama queen, who wanted to use my whole life as her runway as she strutted her stuff. Red for me was a reminder that she was coming into town, and that meant my life would change, I should have adjusted and adapted since her visit was periodical ( pun intended) but it still shook me every time. She was always EXTRA, robbing me subtly until she decided it was not worth hiding and did it in plain sight.

Then came Endo, Aunty Flo’s sidekick who refused to leave. She was like a leech, going in for blood; a permanent guest with terrible manners, hogging all that was mine and redefining me to myself. I was moody, understandably so, and irrational. My relationships suffered, and it was hard to give love when I felt like I was hemorrhaging the essence of who I was.

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The thing about living with pain is that sometimes you miss out on celebrating special days, because of pain, fatigue and/or other complications. When you are finally well enough to celebrate the after-party clean up has already been done.

This Valentines (week), we are taking time to celebrate the MVPs who are constant through the pain, those who are present, pillars of strength, voices of encouragement, bearers of hope even when they do not fully understand the pain that we undergo.

For those who help us feel like roses: soft, beautiful, vulnerable, dainty and precious, when in reality we feel like thorn bushes,  horrible to be around, offensive, not the best to look at and dull.

We celebrate you and we thank God for you. Thank you for being in our lives and loving us. Our journeys are a little easier because of you.

Endo Prayers: Missing Out On Opportunities

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Dear Lord,

My heart is heavy, burdened by the weight of all the opportunities that I have had to say ‘No’ to because of the pain and discomfort. Many times I am willing to take up great projects but my energy levels fail me. The pain overwhelms me. I fail myself.

Please help to be patient with myself, to do the things that I can in this season, and to find the silver lining in the midst of the storm. Grant me your contentment, joy, and peace to get through this.

In your time, please give me other opportunities to be there for those that I love, to do the things that I love and to be the person that I would have loved to be.

In Jesus name, I pray and believe,

Amen

Endo Prayer: When My Cycle is Erratic

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Dear Lord,

I can’t seem to understand my body. My period cycle is everything but predictable. My hormones are all over the place and this is affecting my life as a whole.

I’m struggling with feelings of anger, and I feel like I am losing control over my emotions and my body as well. When my periods come, the flow is irregular and the duration fluctuates from month to month.

Please help my hormone levels to become balanced. Help my body to have a predictable cycle. Please forgive me for the things that I have said and done as I have used this state as an excuse.

Reveal to me the things that I need to do and stop doing to help my hormone levels get back to normal. You knit me in my mother’s womb and I know that nothing is too difficult for you. Revert my hormones to the optimum levels.

In Jesus name, I pray and believe,

Amen

 

Endo Prayer: Struggling With Lifestyle Changes

 

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It’s February and I haven’t been able to sustain the lifestyle changes that I set out to make. I’m discouraged because I feel like I keep disappointing myself. I can give excuses but deep within I know that I have been my greatest barrier.

Lord, please help me to see myself through your eyes. To love every part of my being. And to see these changes as a good thing, not a punishment, so that I do them out of a place of love.

Give me divine wisdom to know what to do, help me find what will work for my body. Change my attitude as I do this.

Strengthen me and renew my resolve to be kinder to myself in all that I do, to eat well and exercise. Help me to be a good steward of the body that you have given me. Even in the moments of pain, help me to see that you are right there with me.

In Jesus name, I pray and believe,

Amen

Endo Prayers: I Feel Misunderstood

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Dear Lord,

This is hard. My tears have become my food and I feel as though I am falling apart. The pain is not only during my periods but all through my cycle and I do not know how to explain it to those around me.

Though I look okay on the outside, I am caving in on the inside, and I feel alone. Hurtful statements have been said by those around me, some of which have pierced the little space that Endo isn’t already crunching on. The pain has multiplied.

Lord, you see my heart and my inner being. Please give me peace, strength, and understanding. Help the pain to go away because I feel like I’m clutching at straws. Help me to love even though I am hurting.

For those around me, I pray that you will help them to see the pain beneath my smile, help them to be more understanding and kinder in their speech.

May you be glorified in and through this.

 

In Jesus name I pray and believe,

Amen

Stories Wanted!

Never underestimate the power of a story. It has the power to transport, transform, reassure and encourage.

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This March,  I would like to share an Endo story every day to help raise awareness for Endometriosis.

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Let us show the world that you do not have to look a certain way to have Endo. That the beauty and fragrance of the rose do not take away the prick of the thorn, it still hurts.

If you would like to share your story please send me an email via yellowendoflower@gmail.com and I will be in touch.

Thanksies.

Endo Prayer: When I Feel Overwhelmed

There’s a dark valley that the Endo journey plummeted me into. In that space, I have struggled to keep hope alive, stay positive and pray.

I’m not where I used to be, but because I know no-one is immune to the darkness and the feelings and thoughts that come when in that place, I will be writing Endo-prayers, little prayers that you can whisper when you feel like an assortment of emotions.

Some days have been harder than others, but there in the darkness, I have seen a glimmer of light and hope. I know that even in the difficult moments, God is there.

Here is the first prayer:

Dear God,

I thank you because you formed me in my mama’s womb. There is no part of me that you do not know. You see all of my organs and see where the Endo cells have carved out a home.

I feel overwhelmed, and sometimes so helpless because I’m struggling to understand your plan in this place of pain. I desperately long to see Your face in this phase, but It’s hard to focus when my tears are all I see.

Please comfort me and ease the pain. Remind me of your love for me.

In Jesus name I pray and believe,

Amen

Blessings!

If you need to talk, or a sounding board, you can send me an email via yellowendoflower@gmail.com

5 Ways To Navigate The Endo Inspired Energy Rollercoaster

I seem to have found the spring in my step. Some mornings I wake up feeling like an Energizer bunny, it is such a good yet surreal feeling. One of the aspects that I hate about Endo is how it hampers with energy levels.

I went from being an energetic teen to a mostly-tired human being. Sometimes the fatigue was physical, other times it was mental, but it was altogether overwhelming. I’d wake up in the morning after an 8-hour sleep feeling like I had been digging all night with interval naps on a bed of thorns. An exhaustion where even your skin is tired. It is hard to glow when you feel so tired. It is hard to be excited about anything when your whole being is just focused on mere survival, no thriving, just living.

Over the last year, I have found a few things that have helped me navigate this tumultuous journey.

  • Keep a Period Diary

My period diary has shown me that my cycle affects my energy levels. This has been so critical to understanding my body has also helped me be kinder to myself and prepare in advance. Putting systems in place to help me on my low energy days makes them more manageable. I am most exhausted when I’m on my period, on day 1 a flood of sleep sweeps over my being. Once I have slept, I wake up feeling brand new.

I have more energy to arrange and do administrative work after my periods, so I schedule such tasks after my period and prepare for this low energy phase by doing them in advance.

  • Check your weight

After I took Lupride, my limited level of energy diminished, I was now getting energy from my reserves. I was surviving on the morsels. Meagre tasks felt like they were so much work to do. Pregnancy caused my weight to yo-yo and the hormonal imbalance also took a toll on my energy. I didn’t look overweight, but I felt so heavy.

Now that I have lost some weight, I am feeling more energetic. Ready to get back to an active lifestyle this year.

  • Check your diet

The fastest way to deplete my energy is to eat too many carbs. My body is in a somewhat complicated relationship with wheat. It tolerates it in small quantities if I have too much of it, I bloat, get cranky, fatigued, constipated and get canker sores. That is a horrible combination.

My pick me up drink is ACV, it has been so invigorating, though my three-year-old daughter is so high-nosed about my elixir. I wake up early to drink it in peace because, in her words, ‘it stinks’, but I love it. The benefits far outweigh the bad smell. It’s an energy drink sans the hidden sugars, preservatives, and palpitations.

  • Avoiding mental stress and fatigue

We often underestimate the effect that mental and emotional stress has on the body. The body and the mind are connected, when you feel drained emotionally you may also feel physically fatigued.

There are days I have woken up after 10 hours of sleep, physically rested but mentally exhausted, which means still unable to perform the tasks that I need to do. I am more sensitive to my emotions because they affect how much energy I have at my disposal.

  • Find something that fills you

Self-care is absolutely important. When you are fatigued it is hard to do things for yourself, but these small things are great pick-me-ups.

I am writing a list of the things that make me happy so that I can plan to do more of these things and fill my cup. You can’t pour out of an empty cup, when you fill yourself then you have something to give.

Here’s to more energized and happy days.

7 Truths Every Endo-warrior Needs to Know

The Endo journey is colored with a lot of pain, uncertainty, darkness, medication and anxiety. Here are 7 truths that every Endo-warrior needs to know:

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1. It is not all in your head

Pain and discomfort are personal. There is no scale that it has to be measured by for it to be termed real. The manifestation of Endometriosis and it’s symptoms differs from person to person. You do not need any person, or physical depiction to validate your pain. Pain is your body’s way of asking for help, so it shouldn’t be ignored or covered up, but treated with the seriousness that it deserves.

2. You are not alone

One in ten women suffers from Endometriosis. Invisible diseases can be very difficult to live with, the truth is that many people may not understand, but that doesn’t mean that no one understands. There are communities of women who are willing to walk with you and stand with you. If you are in Kenya, you can plug in to Endometiosis Foundation of Kenya, Endosisters East Africa or contact me via Yellow Endo Flower. For the international community, please look for the Endo foundations or orgnaizations in your area.

3. You are strong

Holding on takes strength. When you are low on spoons and wonder how you will make it through the day, remember that your strength is intact. It is not measured by the things that you do or achieve; being takes strength, choosing to fight another day takes strength, crying takes strength, acknowledging your limitations takes strength. Oh, dear Endo warrior, you are strong, even when you feel like everything but it.

4. You are your greatest advocate

It is good to have a support system and good team of healthcare professionals. The truth is that they may let you down, and in the moment of despair you may feel defenseless and alone. Deep within you need to understand that you are your greatest advocate. No one can fight for you like you can. If something doesn’t feel right, stand up for yourself. Listen to your gut, the small voice that whispers the ‘buts’ and then speak up.

5. Information is power

There is a lot of information out there about Endometriosis, when you have the energy, read and research. Interact with others online and learn from their experiences. Read the fine print of pamphlets, then listen to how your body responds to medication.

Ask your health provider questions, and try to understand the procedures and treatment plans that s/he prescribes.

6. Your voice matters

When you are ready to share your story, please do, because your voice makes a difference. There are so many women who have no idea that Endometriosis exists, so many women who are suffering in silence.

If we all speak up we will cause a revolution, and many women will be able to get the proper diagnosis in less time and quality health care.

You can read stories of Kenyan Endo warriors here. If you would like to share your story please drop me a line via yellowendoflower@gmail.com

7. You are a star

Deep within you, there is a light that no amount of darkness can dim. Even the depths of Endometriosis and the darkness that it brings cannot hold you back. Take it a day at a time and try to see the silver lining on the grey clouds.

Shine. Dazzle. Be.

Reclaiming What Endo Stole From Me

Happy New Year Everybody!

I have this spring in my step after getting some much-needed rest and relaxation.

A few days before Christmas, I met up with a few Endo warriors and we talked, laughed, and loved being in a space where we could identify with each other. I have many thoughts on Endo, but the one that struck me during this meet is that Endo is  THIEF.

Endo is the kind of person who comes into your house and turns it upside down, a person who doesn’t respect boundaries and wants to leave a mark on every part of your life. The one who drives you up the wall and then has the nerve to ask what the matter is. The biggest naysayer, the one who makes you doubt yourself, your abilities and your dreams.  Endo is like a rat that bites your toe as it blows, then one day it turns into a vicious animal and eats up your whole foot. Endo is a sneaky thief that deserves to be lynched in public, in other words, we need a cure.

“What has Endo stolen from you?”I asked the ladies.

When it was my turn to speak, I shuddered at the thought. Over ten years ago, I loved to hike, in fact, the revolutionary period where Endo reared its ugly head was on Mount Kenya. I had this dream to climb Mount Kilimanjaro and participate in other exciting adventures. These dreams and desires died a natural death, endo has a way of suffocating the life out of dreams. When flare-ups, chronic fatigue, and emergency visits are the things that you think about often, you forget that your heart can beat for anything else other than survival.

 

Endo stole a part of my life and I even forgot about it. After the meeting, I was determined to reclaim what Endo stole from me. Over Christmas, I had a chance to walk along Lake Elementaita, it was beautiful and humbling. It was my first walk clad in sneakers in 11 years. I didn’t feel the weight of my daughter on my back, I felt liberated and restored. If my sneakers could talk, they would tell a tale, one filled with adventure.

 

I’m writing down a list of the things that Endo stole from me and reclaiming them one by one.

Here’s to rediscovering ourselves post-endo, pursuing adventure and dreams coming true in 2018.

Happy New Year!

 

Auntie Flo’s Words of Wisdom

Auntie Flo’ gave me a dose of common sense earlier this year. As she ended her TEN-day visit, which was much longer than she was welcome, she said, ‘Ess, I am the tip of the iceberg. I’m just here to show you what’s going on within.’

I was upset! First, you overstay your welcome, which is very expensive by the way. I didn’t know that many pads could be used in a month, then you want to get all ‘Snippets from a wise lady’ on me. Puh-lease.

But there is something about truth. It sinks into the deepest part of your soul unless you suffocate it with a blanket of ‘What-do-you-think-you-are-doing-here?’. I tried to use this blanket, but truth kicked like a baby in utero after the mama has had a cold sweet drink. I could just see the kicks all over, to boot, my soul, in the depths of my belly, was playing ‘Moves Like Jagger’ and I had to stop and listen to the music. It wasn’t a coincidence.

After you’ve bled for 10 days you sober up. Whatever stupor of denial you were in ends with immediate effect. And then you begin to process the words that were said.

Zen Function Wellness puts it really well, ‘Your period is like a report card, either reporting that you have fantastic hormonal balance, a nourished and well functioning system with easy, smooth, predictable periods, or that you may have a deeper health issue resulting in a not-so-great report card with irregularity, cramps, pain, nausea, severely erratic moods.

Knowing your cycle is actually a wonderful tool that women get to have to help keep track of their health status, a monthly report on if they should pay a bit more attention to their health and their bodies.’

The thing that I liked about report cards in school is that there was always room for improvement. In Class 3 I aced my Math test and the teacher wrote, ‘ Good job! The sky is the limit.’ Then, I was over the moon. Now I know that I should always strive for better. For well-balanced hormones, for smooth skin instead of fewer pimples, for a regular, pain-free period.

As I reviewed my period that month, I knew that I was failing. Auntie Flo’s extended visit was my body’s way of telling me that something was not right. That I needed to pay attention to my internal environment and make necessary changes. I am still recovering from that bad month, it affected my whole cycle by adding an extra day to my regular cycle, which is one day too long. But, I am working on getting my body back to normal.

This week I am doing a period audit, going over my period diary and plotting graphs to see the cycle from another perspective. When you zoom out, you see the bigger picture.

Have you done your period audit for the year? Here are some questions that can answer to get the conversation going,

How has your cycle been this year? Regular or Irregular? Painful?

What has your body been trying to tell you?

What changes are you making to boost your health?

If you would like to know what to look out for in your cycle, how to keep a period diary and chart the patterns, keep it locked here. My book ‘Bloom – A practical guide for your period journey’ is out this week. I am extremely excited to equip and empower more girls and women to track their periods and begin to decipher what their bodies are trying to tell them.

Happy Blooming!

 

 

 

The Path To Adoption In Kenya

At the heart of adoption is a conviction, one that sets your feet in motion. Good intentions are not enough to navigate this road, but with good directions and signage you will make it to your destination safely.

Grace Wanunda of Adoption is Beautiful – Kenya, shared a step-by-step guide to help anyone who wants to adopt in Kenya.

The Adoption Agency

  • Identify an authorized Adoption Agency to work with.
  • Visit the Agency for initial interview. They will ask you why you want to adopt, at this point feel free to ask as many questions as you like about all the aspects of adoption e.g costs, what it entails, procedure, home study, placement, foster and the legal process.
  • You will be required to fill forms, attache relevant documents as requested by Agency and return within the shortest time possible.
  • A social worker will visit your home and file a report if the environment is conducive for the child.
  • You pay the facilitation fee to the Agency.
  • Attend counseling as directed by the Agency.
  • Your documents are presented to the Case Committee.
  • You are approved or deferred, your Agency will advise you in writing.
  • Matching and placement is done by your Agency

The Foster Period

  • The duration of the first 3 months that you  have the baby at home is known as the Foster Period. During this time you visit the Agency twice and give a report on how you are bonding with the baby.  Feel free to raise anything that you would want the social worker to know concerning the baby. The social worker will visit you again to see how the baby is doing at home.  He/she will file a report on the same.
  • If you’ve bonded well with the baby during the 3 months you can start the legal process of Adoption.

The Legal Process (Adoption)

  • You can represent yourself or hire a lawyer if you are not conversant with the legal process.
  • The first appearance is appointment of Guardian Ad Litem – This has to be a parent, they can either be your friend, relative or a social worker.  This person should be very familiar with your journey as she/he is expected to write a report and file with the court on why they feel you should be allowed to adopt the baby.
  • The court will ask the Children’s Department officer in writing to visit you, see how you have bonded with child, write a report and file it in court within a period of time. You are expected to follow them up and make sure that they make the visit within the expected time.
  • The Legal Guardian should be a couple married by law, they are expected to swear before the court that should you die before the child is 18 years, they will stand in for you and take care of the child until the child attains maturity.
  • The Agency that declared the child free for adoption is expected to appear before the court and explain why they declared the child free for adoption and why they think its in the best interest of the child for you to adopt them.
  • The Judge will study all the documents presented and give consent for you to be the legal parent of the child. The parental rights of the biological parents are terminated thereof.
  • The Judge will issue you with a court order and a copy of the judgment.
  • Your lawyer will apply for the adoption certificate, where the child is entered into Adopted Persons Register.
  • You can apply for the birth certificate in your name.

The requirements for adopting a baby:

You must be

  • A Kenya citizen
  • 25 years and above
  • 21 years older than the child you want to adopt
  • Have a home, rented or owner occupier
  • Of sound mind
  • Free from criminal records

Also note that:

  • A single female applicant can only adopt a girl, unless under special circumstances and vice versa.
  • Married couples must be married for three years and above, they can adopt any sex. They need to work as a team.
  • Your medical report – HIV and Urine tests are mandatory (People living with HIV can adopt)
  • Financial proof that you can take care of a child, e.g salary slip/bank statement/business ownership etc

To ease the experience, please avoid,

  • Soliciting a child from anyone other than legal adoption agencies. This includes relatives.
  • Offering money to buy a child.
  • Adopting without a ‘Free-to-adopt’ declaration by a legal or authorized adoption agency.
  • Working with a lawyer who is not well acquainted with the adoption process as this may cause unnecessary delays.

Ensure that you get written parental consent from the parent or relative giving out their child for adoption.

If you feel for any reason that you have not bonded well with the child, please feel free to talk to your agency or social worker.

You are free to do a medical test on the child you are adopting, before you commit to take the child.

When choosing a legal guardian, choose someone you can trust, they are your child’s second parents.

It’s important to note that not everyone who supports you right now is for your child. Write a will and include your child in it prior to your demise, this will reduce the chances of him/her suffering in the hands of relatives.

Every Adoptee has a right to know who they were before adoption, feel free to walk them through the journey, if you don’t tell them, someone will do and they might not tell them in the right way. It can lead to rebellion!

If you would like someone to hold your hand as you walk this journey, please give Grace a call via 254-724-841-245.

 

Adoption is Beautiful

‘Family doesn’t only happen genetically’, is a quote that needs to be shared widely.

November is Adoption Awareness Month. Some of the stereotypes that surround adoption are, ‘Adoption is for the rich, foreigners and people who have difficulties conceiving. However, the narrative is changing, more and more people are embracing adoption as a beautiful option.

Grace Wanunda shares her life and heart with us; adoption was never really her option, but it became one of the best things that she ever did.

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Grace is the epitome of grace, she is strong yet tender and a well of wisdom. She is a born again Christian, and an introverted, single mother of one adopted beautiful daughter called Angel Faraja. She has never been married and doesn’t have any biological children. Her and Angel are blissful together.

Some of the things that she loves are good worship songs and listening to her favorite preachers Bishop Noel Jones and T.D Jakes. Praying is also at the top of her list of things she enjoys doing.

A person that is in need of help tags at her heart strings. She believes that her humble background and wilderness experiences have made her heart beat so hard whenever a situation, where someone needs her help, presents itself.

What inspired you to Adopt?

“It all started in my dreams,” she says, “I had a dream that I didn’t understand the meaning, after much prayer asking God to reveal the meaning to me, He started speaking to me more clearly.  However, because adoption had never been my option, it took sometime before I got to understand what was in the mind of God for me.  Every time God would bring another dream, and I would not connect it was about adoption, because I was completely against it.  I remember, I kept praying like this ‘O God of all secrets, according to Deuteronomy 29:29 reveal to me the hidden meaning of this dream, whatever it is I will do, I will not fear men, but I will live to fulfill that which you have called me to do’.

I watched a TV program called Faraja by Jamila Mbugua, she interviewed a couple who had adopted two children due to infertility, it’s there that I learnt that a single person can adopt.  There was an adoption officer who explained the process, though I didn’t know of any agencies at the time.

I continued praying and one day I went to the salon and my hair dresser, Josephine, gave me a True love magazine and on the cover was Caroline Mutoko and her adopted daughter Nduku, I literally trembled as I opened up to her that I had been dreaming so much of adopting. I shared with her my ‘good’ reasons of why I can’t adopt, but Josephine took the opportunity to encourage me on how adoption is a blessing. She said that I should pray over it and reconsider. As we spoke she promised to connect me with one of her clients called Hellen, who happened to have adopted, and worked for Little Angels Network Adoption society.  As we were speaking, Hellen walked into the salon, that was not just a coincidence, it was a confirmation that God really wanted me to adopt.  I took her number and promised to call her to know more about adoption.

Then came the roller coaster of emotions

“I rushed out of the salon and went straight to my car and broke down. I was mad at God! However, I recollected myself, went to my house and I prayed, “God, this is my last test, if you are calling me to adopt, I am going to call my mother now! I will tell her about adoption and whatever she say, that I will do, so speak through my mother.”  I called my mother, and spoke to her about adoption and explained all the negative things that people say about adoption. When I was done, she asked me “What have you been waiting for?” She continued, “No one takes care of another person’s child, unless God is involved.  If you thought about it know that God has called you into it.  Go ahead and do it.  Let no one stop you.” She continued “Who adopted Moses? She was the daughter of Pharaoh, she was unmarried, let no one stop you.  God doesn’t look at your marital status he looks at your heart.  You have my blessings, go ahead and adopt.”

I was overwhelmed with emotion. Adoption was not my option, I expected my mother to say “NO” so that I could tell God, ‘You see, she refused and I have to obey her,’ then I remembered I had asked God to speak through my mother, therefore, I knew that it was God speaking through my mother.”

Two months later ,in denial, I decided to visit Hellen and she shared her journey and fulfillment. She took me through the process and later gave me the number for Little Angels Network Mombasa Social Worker called Anne.  I called Anne and visited her in office. There I took the forms and started the adoption process.”

What was the process like?

“From application, my approval took about two months, however, the placement took about 6 months.  A single applicant can only adopt a baby of the same sex, therefore, I could only adopt a baby girl.  Statistics show that many single ladies are adopting, meaning they only adopt girls, on the other hand, most couples prefer girls to boys, making the demand for baby girls shoot up and that leads to a longer waiting period for placement.

After placement, I took my daughter home for a foster period of 3 months.  When the time lapsed I hired a lawyer who filed the case with the High Court of Mombasa. She charged  Kshs. 40,000/=  as the legal fees. The legal process took another 8 months to be granted the parental rights. In case a parent doesn’t have the legal fees, they can represent themselves in court.”

What was the biggest challenge that you faced?

“My biggest challenge was the anxiety as I wait for placement. I was so depressed because of the fear of unknown! I thought it would be easy as pap but the 6 months really weighed me down.  Nevertheless, my daughter was worth the wait!”

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How did life change when Angel came home?

“My life changed for better! My priorities changed, Angel was at the top of my priority list. My investments changed they became more baby-oriented, I took an Education and Health policy immediately. I started going home immediately after work, I would go home for lunch and there are times that I sneaked from office to check on her.

My MD gave me one month and I thank God for him, for all the support that I received. My journey has been one of the best! The most successful and fulfilling thing I have ever done in my entire life is Adopting. My precious Angel is a miracle baby, she has been in good health all through. Now,  at 3 years, I only attended clinics.  Her growth has been from glory to glory, she feeds very well and sleeps throughout the night. She is full of energy, loved and favored by God and men.”

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Grace is the Chairperson of the Adoptive Parents Support Network that offers support and advice to adoptive parents. They have a Whatsapp support thread that is a safe space for parents to share their challenges and celebrate their victories. Their intention is to reach as many parents as possible, to walk together and to enjoy the journey.

There are 84 parents in the group to date. Anyone who has done adoption the legal way or who has been approved for adoption, is welcome to join them.

To help create awareness on matters adoption,  Grace founded a Facebook group Adoption is beautiful – Kenya where she shares regularly.

 

Gems of wisdom that you’d like to share with someone thinking about adopting?

“Adoption is divine, it is godly, it’s a blessing, it is doable, it’s not only for the rich nor the barren, but for all of us.  There are so many children in the homes who need us.  The Government of Kenya banned inter-country adoptions, meaning, no foreigner is allowed to adopt a Kenyan child, for a long time there was a perception that adoption is for foreigners and the rich.  Now that they are not allowed to adopt our children, would you consider adoption? No child deserves to live in a home. By adopting a child you will give that child an opportunity to be raised in a family set up, which is far better than most homes.”

Jesus said  Matthew 18:5-7 5And whoever welcomes one such child in my name welcomes me.”

Grace’s story has been such an encouragement to me. Adoption is beautiful.

If you would like to contact her, please reach her on +254-724-841-245.

Blessings,

 

 

Yellow Flower Network

Invisible illness can be lonely, confusing and consuming. There are many times you doubt yourself and the manifestation of the pain. Leaving your bed on somedays can feel like doing calculus, it has to be a calculated move. Some days the method makes sense and on other days, you don’t even know where to start.

The idea to start the Yellow Flower Network was birthed a few weeks ago when I realized that I want to support women in Kenya and give them the personal touch, but I am not physically able to.

My inbox is a buzz with women looking for support, women who have just had surgery, women who would like to meet other women to let them know that they are not going crazy, and that the pain is not all in their heads.

Yellow Flower Network

My desire is that no woman will walk alone, that every Endo-warrior will know that they are not alone. That the thing that tried to break her, will reveal a reservoir of strength and it will enable her to be encourage others.

If you are interested in supporting other Endo warriors in Kenya by texting, calling or visiting them when they are in need (in hospital, post surgery), please send me an email via yellowendoflower@gmail.com and I will be in touch.

To start us off, one of our Endo sisters, Jahmby, needs our help. Let us support her in any way that we can.

Jahmby Koikai

*endometriosis

 

The Kenyan Endo Story: Reshma Maru

It’s difficult to tell the battle a woman is fighting by looking at her. Endo is an invisible force, it is tiny and mighty. It attacks from the inside out, Endo pain is something that all girls would love to live without.

There is a resilience, a fire in her eyes, a desire to win that Reshma has that lets you know that she is determined to beat Endo.

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Reshma Maru is a 27-year-old who works in procurement for a furniture store. She graciously shared her story with us.

What makes me smile is a face of a child-the innocence they show and so pure at heart. If there is something I can smile about, it is fantasizing about how I can hold my own child and just hold them close to me.

 

I started my periods at the tender age of 11. I would hear girls in schools saying that it is like a disease where if one touched a girl who had her periods it would spread, so I kept it hush from friends and even my mother. Being the only girl brought up in an Indian family I didn’t have someone to confide in, the day that my mother found the bed sheets stained she was furious that I did not tell her I had started my periods. In the Indian culture it is important to tell your mother so that she can explain to you that when you are on your periods you do not go to the temple or touch someone who is going. So many myths came together with this.

 

I went through years of painful periods that would last 7-8 days. Panadol was my best friend and without it I would not last any of the days, I just knew that ahhh its periods they are always supposed to be painful, so it is normal.

 

The pain got worse when I was 24 years old. I would have the normal painful period but the pain would continue even after the periods were over. So two weeks down the line I was like ‘This cannot be period pain, it must be something I have eaten.’ I went to a general doctor and explained all my symptoms to him, and he said that it sounds like amoeba. He took a stool sample and said that he found traces of amoeba and that was a sigh of relief as I knew there are medicines to get rid of them. I was on medication and a few days after ovulation I was pain free.

 

The next month came and I got painful periods and the same pain after the periods. This time I ignored it and took antibiotics for two weeks and voila I was back to normal. I just thought to myself that since the previous periods were painful I may have a less painful one next month. Come next month the pain was worse. I would get hot flashes, nausea, lack of appetite, and pain all over my abdomen especially my left side.

 

Since I had a medical cover at work I decided to go see a gyno and just get things checked out as it may be a small issue and besides since I wasn’t for it why not. I got advise from fellow workmates on which gyno to go see since they were using the same. The gyno advised I do a blood test and a scan so that she could have a clear view of what was causing the pain. When she saw the scan report she looked at me and said you have been diagnosed with Endometriosis. At first I was like ‘Huh? that is a long name to even pronounce let alone spell.’

 

I took the prescribed medication and decided to google the sickness she had talked about. After the research, I concluded that it was a common disease so may be the Vissane that she had prescribed would cure it as the box read specially for Endometriosis. I took it for 6 months as I went for regular checks with the gyno and I was really really happy. Vissane suppresses your periods, so no periods = no pain for me.

 

I was three months away from my wedding and pleaded to the gyno for me to continue the medication until my wedding and honey moon were over. She agreed and said that I should get a baby and all these problems should disappear. I was happy that I was pain free, able to work, plan my wedding, run around here and there.

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I actually ditched the contraceptives when I started gaining weight and getting very emotional almost every day. I started going to the gym to lose weight but after 3 sessions max and I could hardly keep up. I was always tired, my feet always hurt, my shoulders felt like someone was sitting on them, I would cry for no reason over the tinniest things. My husband would be like, ‘What is the matter be strong,’ and I would just look at him and just cry and cry.

 

This time time when my periods came, the pain killers did not work at all. I could feel the pain like I was being stabbed on my left side but nothing was working. I even went to work in all that pain just waiting for the painkiller to kick in and may be get distracted from the pain while working but nothing worked. I rushed to my gyno and pleaded she does something about the pain. She injected me with stronger painkillers but nothing changed. All helpless I now asked her, “Please just tell me anything else we can do because I don’t think I will last a day like this.” If I saw a knife that day I would have stabbed myself just to remove whatever it was causing the pain as I knew exactly where it was.

 

She advised that I be admitted right away for a Laparoscopic surgery. Without knowing the details I was ready to go through it just to pass through this hell. In the evening as I was prepping myself for surgery, I started thinking ‘What is this I have agreed to do?’ but I prayed all will be well and went for it. A surgery that was to take 2 hours ended up taking 4 hours. I came out of surgery with a numb tummy and no pain I was like ‘Wow! I like this feeling.’

 

The pain started after I was out of hospital, I was constipated, healing from the surgery itself, dealing with a dry throat caused by the tube they insert down your throat during the surgery, extremely emotional and hating on those who didn’t come see me in hospital including a Best friend who I decided to let go of. I went back to the gyno for my report and to ask why the surgery took so long and she explained that I had a normal cyst and inside that there was now an endo cyst growing both being 5.5cm. These were on the left ovary therefore causing the excoriating pain. They were removed but since they were on my ovary the top tissues were removed as well so healing would take some time.

 

Post-surgery, I am still struggling to join this diet plan that endo patients are asked to follow but my work mates give me support and also join me in eating right. I do not want to lose a job or give up on life because of this. Believe me it is so hard, I lived for food and now I get told do not eat this or that. You think like where do I start looking for organic food and even when you do find some you are too weak to cook it for yourself.

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But believe me nothing is worth your health. The bills that you get with medication and surgery are more expensive than just eating right and taking care of yourself. I am now hearing of foods or herbal meds and I’m willing to give them a try.

 

This has really changed me in many ways – I am closer to God more than ever, thinking of him everyday – I am more positive and really willing to help someone else through this because NOTHING is possible without the support. When you are left alone your get negative thoughts play in. Even just listening to someone vent is good enough for me because we all at one point want to do that.

 

I always want to help and be there for anyone going through this as no one understands your pain like a fellow endo-sister. I believe this will be a thing of the past but this can only happen if we create awareness and research on what works or doesn’t work for each other.

 

What I always keep in mind that God gives the toughest battles to those he loves the most. Let’s not give up and always be there for someone whenever you can because time is short, let’s not run out of it!

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courtesy yesofcorza.com

My favorite flower is a black rose as it is unique and rare to find just like you!!

You can connect with Reshma on:

Facebook – www.facebook.com/reshma.maru

Instagram –https://www.instagram.com/drop.dead_diva/

Are you an Endowarrior living in Kenya?

Would you be interested in joining a community of women who support each other in this journey?

Do you suspect that you could have Endometriosis and are wondering where to start?

If you answered yes, please leave me a comment or send me an email via yellowendoflower@gmail.com and I will be in touch.

Despite the adversity and circumstances that surround us, we will still bloom and dazzle the world with our presence and beauty.

We are flowers; delicate, resilient and strong.

Yellow Flower Mail

The cold floor and I were once good friends, not by chance but as a result of circumstances. When Auntie Flo’ checked in, the pain would overwhelm me and the cold floor was my happy place. The pain felt like a furnace was in my belly, the painkillers seemed like drops of water trying to put out a raging fire.

My eyes were always moist, dust particles had an eviction notice every other day. Crying sessions were part of my routine, the pain made me feel like God, the world and my body were against me, no one wanted me to prosper. As I balanced on my sides I wasn’t seeking prosperity, it was survival I was after. I just wanted to survive, to be well, to be pain-free.

Eight years later, my story has changed, I’ve come a long way and the pain has subsided, I have energy and I have a testimony.

2 Corinthians 1:3-5 (AMP)

Blessed [gratefully praised and adored] be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort, who comforts and encourages us in every trouble so that we will be able to comfort and encourage those who are in any kind of trouble, with the comfort with which we ourselves are comforted by God.

I want to share the comfort that I have received with other ladies fighting Endo in Kenya through handwritten letters of hope.

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If you are an Endowarrior living in Kenya and you would like to receive Yellow Flower Mail please fill in the form below and I’ll get writing.

https://www.surveymonkey.com/r/M6G3NQ2

If you would like to support women living with Endometriosis please send me an email via yellowendoflower@gmail.com and I will be in touch.