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.

 

 

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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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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!