#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.

 

 

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#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 2)

You can read the first part of Trish’s story here.

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Cyclically, there have been instances of extreme hypoglycemia which I mostly just conclude is endometriosis related as it correlates with my cycle to the T. There have been instances when the hypoglycemia has left me perilously faint in public. Nowadays I carry a glucose tab to fix this emergency should it occur at the wrong time and place. On the flip side, this is another of my indications that my flow is here and this may last through the cycle. This is often accompanied by cravings for sugary or oily foods. 

 

I am currently not sexually active, but back then when I was, endometriosis would affect my sex life because of dyspareunia- or what the layman refers to as painful sex. In the past I was fortunate to have a long time medical boyfriend who understood this and was supportive- adjusting accordingly. It is hard to explain the same to other men making me shy off sexual activity and relationships altogether.

 

Now I understand why the psychologist was called on board on the material day when hell broke loose for me. It is never normal. The brain suffers a blow – nasty headaches and general malaise are proof. Mood swings and irritability have characterized my persona for a long time though I have learned to manage my emotions. Remember this is also a side effect of the medication. At some point before my surgery, endometriosis symptoms were adverse and due to my ignorance, the tracking of these symptoms was poor so all I remember of my past cycles is the pain. All I knew was long painful periods. I was unaware of the association with other conditions. But after my surgery, the awakening began, I started understanding endometriosis. In addition to the enlightenment, a long remission followed the surgery. 

 

The Side Effects

 

The burden of drug side-effects and drug dependency is heavy with endometriosis. Sometimes I am not sure what is harder to deal with, the endometriosis or the side effects of the treatment plans. Every drug that is consumed has a side effect, a cost-benefit analysis needs to be done.  Archetypally, I have in addition to this suffered dependency to pain medications that have CNS action. It is not strange to find me conjuring non-existing symptoms to get that strong painkiller that gives a high and a calming sedating effect. I may as well have used surgery medication in the process. On the other end are drugs whose side effects are harmful, affecting other bodily functions, systems, and organs. 

 

I became a hypertensive at the age of 27 years for various reasons (I have an autoimmune disorder) but the endometriosis compounded the situation. I am now on two drugs to manage the high blood pressure: a beta blocker and an angiotensin-converting enzyme inhibitor (ACE). Remember these too have side effects. The ACE has left me with a chronic cough whose treatment is best with syrup containing codeine which is very addictive. I also suffer from drug-induced peptic ulcers from non-steroidal anti-inflammatory used to manage inflammation and pain from endometriosis. To counter their effect I have to take the NSAIDs with proton pump inhibitors (PPIs) to protect my stomach from further irritation by reducing stomach gas production. Only God knows the long-term effect. Common short-term effects are constipation worsening my endo triggered constipation. Regular antibiotics used to treat the occasional infections makes me susceptible to yeast infection as it alters the normal flora in my system. I always have an antifungal at hand should the situation move to yeast infection. I am mentally depleted and fatigued 24-7; it takes a lot of internal push to get going but the energy levels are mostly so low and fatigue always looms.

 

Progressively I have learned to live with endometriosis. I doubt I can properly weigh any of these symptoms as better or worse. I treat myself more often than not as it saves me time spent in the ER and money paid in for consultation as I am in between jobs and do not have a medical cover.

 

Through the Endometriosis Foundation of Kenya Whatsapp group, I have met fellow women, young and old alike, some with shared backgrounds all affected by endometriosis. I interact with and encounter women suffering similar and disparate forms of the condition. I get encouraged and encourage fellow sisters, I inspire and get inspired, I get tips and share tips.  I get first-hand experiences from others and I’m able to compare services and treatment plans. We share doctor’s experiences. We also have endometriosis experts who walk us through the maze of the condition as different situations arise. I have learned new concepts. One of the greatest lessons I have learned from the group is about the importance of diet in managing endometriosis; the foods that boost endometrial tissue growth both inside and outside the uterus cavity and those that suppress this estrogen-dependent activity. From this group, I am now proudly off milk and dairy products and have more daunting tasks through diets and exercises which I am confident I shall achieve. 

 

The biggest challenge I have experienced is access to specialized health care while in between jobs. Dealing with flares, monitoring progress, accessing treatment and lifestyle changes all come at a cost and this can take a toll on anyone whether or not one has a proper medical plan. But like any other terminal condition, the dangers of catastrophic expenditure are rife for women living with endometriosis, and especially those not gainfully employed or struggling to eke a living. Secondly, drug addiction requires close monitoring, proper management of treatment and rehabilitation. On infertility, I am not affected but the reality is with us.

 

Anatomically, my coccyx (the tailbone of the spine) was also not spared, and this has adversely affected my back and childbearing process in one way or the other. I cannot sit for long, and though rare inflammation of the coccyx and neuralgia causes unbearable pain requiring hospitalization and physiotherapy. 

 

Fortunately for me, I have been blessed with two children. I had my first child early in my life and was able to conceive and deliver my second child after the endo-surgery. The pregnancy was however closely monitored. 

 

Finally is the challenge of adhesions from the surgeries. I am counting about 5 surgeries in addition to a caesarian section and an appendectomy I’ve had. The scarring affects organs manifesting through pain, organ effect and bodily functions. I must say that I have in the recent past enjoyed being in remission, however,  the situation is gradually deteriorating and reverting to previous critical stages. I will soon be require to go for a review.

 

I would commit a travesty of justice if I concluded my story without identifying policy gaps in the management of endometriosis.

 

    i)  Make specialized care for endometriosis affordable and accessible
    ii) Research widely on management of endometriosis and treatment. Remember many organs are eventually affected and the condition is debilitating.
    iii) Research on genetic predisposition and association with other autoimmune disorders.
    iv) Funding of research and building the capacity through partnership with research institutes and medical institutions.
    v) Proper categorization of endometriosis as a debilitating condition requiring specialized care to avoid misdiagnosis and resultant deteriorating.
    vi) Aggressively research on estrogen specific to the Kenyan woman.
    vii) Regulate reasonable adjustment at work place to accommodate endometriosis patients during a flare and long term therapy that my affect their ability to carry out normal duties and redeployment to a more accommodative position.
    viii) Separate disability leave from sick leave
    ix) Early diagnosis can help prevent infertility from untreated endometriosis.
    x) Health workers should be trained in new guidelines and protocol in the management of endometriosis.
      You can connect with Trish on

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    Trish, thank you for sharing your heart and your life with us. I pray that you will find grace for each day and that you will touch the hem of the garment and find your healing. You are a warrior, you have taught us a lot through your story.
    Here’s to good health and many days filled with energy and contentment.

 

#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!