Where Dreams Fizzle And Fade~ Endo And Your Career

The sight of blood changed my mind. It wasn’t so much the sight, as it was the experience as a whole, the texture, the colour and the pain. As a little girl, I spent hours daydreaming of myself treating little children and seeing them smile again. Having been well acquainted with the pediatrician, it was only natural for me to follow in her footsteps.

My dreams trickled away, I can’t tell you the day the tap run dry, but I can tell you the days there was short supply. In all of the tales, my period is the constant. For someone who thought they could handle sick people and blood, I was awfully grossed out by my own blood, and worse still, it made me sick.

My energy was sapped, I’d writhe around in pain on the cold tiled floor and finally lie in a pool of my tears. My periods killed my dreams.

When I started working, it only got worse. The pain was disruptive and destructive. It came anytime and lasted as long as it wanted. My reproductive system dictated my lifestyle and work schedule. I had lovely employers who accommodated me and my body’s failures. My second place of work was not as flexible and the stress of the workplace took a toll on me. I cried everyday without fail, my body hurt, and my mind was never at rest, so I left. I left to rest and to start a life that could accommodate my life and my body’s quirks.

An endo-sister recently shared with me how she’d have made different choices in her career if she knew it was Endo. I completely understood where she was coming from. My endo journey has taught me that it is okay to start over, to learn a new skill, and to figure it out as you go. My greatest lesson is: It is good to plan, but when your plan is disrupted, adjust to what life hurls your way.

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When It Floods – Endometriosis & Heavy Flow

Big girls wear diapers too.


My girls talk a lot about diapers, my little one is potty training herself. No, really, she woke up one day thia6 week and declared that she was a big girl who didn’t need to wear diapers.  So she graduated to knickers when we are home, this isn’t without accidents and a love-hate relationship with the potty. But, the bottom line remains, diapers are for little girls.


One of the things that I loathed about my periods was that I always received the el-nino version, complete with hail stones, also known as the clots. It was heavy, messy and destructive. It had me longing to stay indoors, to stay tucked in bed, except, it stormed in bed too, and sheets aren’t woven to absorb the red sea. 


I’ve legit thrown away some garments before. I made the grande error of washing off – more like, attempting to wash off – a blood stain with hot water. It bonded. The red carved a home in the threads and refused to leave. I’ve been terribly embarrassed by my periods. Had my self esteem plummet during my periods. I couldn’t trust my uterus not to let me down. The flow sometimes felt like a breast-milk let down, urgent, forceful and absolutely beyond my control. 


I’ve layered and improvised to try to contain the flow. I’ve set reminders to wake up and turn during the night, because the pad just wasn’t loyal. Even layering the pads was not effective in holding back the red sea.

An endo-sister recently shared with me that the one thing she wished that she knew is that adult diapers were an option. 
I never thought of them as an option, in fact, I always considered maternity pads the next best thing. I think it’s a brilliant idea. A lifesaver, and self esteem redeemer.


Big girls wear diapers too. 

Lupron and Endometriosis – What you need to know

There is no known cure for Endometriosis. In Kenya, we do not have access to excision surgery, so doctors perform ablation surgery and then prescribe drugs to suppress the symptoms of Endometriosis.

One of these drugs is Lupron, also Known as Leuprolide Acetate.

Lupron is a Gonadotropin-releasing hormone that is used to treat hormone based tumors like in breast cancer, prostate cancer, lymphoma, and certain kinds of leukemia, endometriosis and uterine fibroids.

It is also used to reduce testosterone in males, to delay puberty in transgender boys and girls till they are old enough to start hormone replacement therapy. It has been used on a trial basis to reduce urges in pedophiles and other kinds of paraphilia.

Administration

It is injected under the skin or in to the muscle.

Side effects to look out for

  • Menopausal symptoms- hot flushes/ night sweats
  • Mood swings
  • Depression
  • Headaches
  • Pain at the injection site – redness/ itching
  • High blood sugar
  • Insomnia
  • Fatigue
  • Diarrhea/ constipation/ nausea /stomach pain
  • Acne
  • Vaginal dryness/ itching/ discomfort
  • Vaginal bleeding
  • Dizziness
  • Memory problems
  • Joint pain
  • Reduces bone density

If it is inhaled it can cause breathing difficulties, asthma like symptoms and skin reactions.

What you need to remember

Lupron is a prescription only drug.

It is not a birth control method, so you can still get pregnant even if you do not get your periods.

If you have a history of osteoporosis in your family, you need to mention it to your doctor because of it’s effect on your bone density.

You need to eat foods rich in calcium and take calcium supplements.

You shouldn’t receive Lupron if:

You are pregnant or breastfeeding.

You have undiagnosed vaginal bleeding

Ongoing drug investigations

There are on-going investigations on the drug with women claiming that it causes more harm than good. You can watch the video below for more context.

https://web.facebook.com/watch/?v=298942434150564

Have you used Lupron before? What was your experience like?

Resources

www.lybrate.com/amp/medecine/lupride-1mg-injection

https://www.rxlist.com/lupron-side-effects-drug-center.htm

https://www.nwhn.org/lupron-what-does-it-do-to-womens-health/

https://youngwomenshealth.org/2014/08/01/endometriosis-leuprolide-acetate-instructions/

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.

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.

 

 

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.

 

 

#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 ~ 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 ~ 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.