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.

Simple Photo Spring Quote Instagram Post (18)

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.

*

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.

IMG_20180315_185852.jpg

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.

*

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

 

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

Advertisements

#31 Days Of Endo ~ Trish Barasa (Part 2)

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

Simple Photo Spring Quote Instagram Post (6).png

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

Twitter

    .
    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 ~ 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.

Simple Photo Spring Quote Instagram Post (5).png

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.

 

IMG_20180306_085443.jpg

 

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 ~ 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.

file1

 

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.

carnations

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!

 

Dear Kenyan Endo Warrior, You Don’t Have to Walk Alone

Living with endometriosis can be hard. A majority of my memories are lonely, scary and empty. But, times have changed. I know that in the event I have a flare up there are women that I can call for advice, support and prayers. Women who get me, and don’t think that I am faking the pain or being unnecessarily sad.

Dear Kenyan Endo Warrior

The Endo community in Kenya has grown. It warms my heart to see the different people shining their lights and encouraging other women. The truth is just because, I walked alone doesn’t mean that other women should walk alone.

If you are looking for women to walk with, cry with and navigate this season with, please see below:

Endometriosis Foundation Of Kenya

It was founded by Elsie Hadassah Wandera. You can read her Endo Story and see what her journey has been like.

There’s a closed Facebook Group for women living with Endometriosis, a Facebook Page to create awareness about Endometriosis and a Whatsapp Group to support Endowarriors in Kenya.

They have meet ups from time to time.

Endo Sisters East Africa

It was founded by Doris Murimi.

They have an office in Thika at Gospel Preachers Church, Karibaribi, Thika, near Mary Hill Girls school. You can follow the conversations on their Facebook Page.

They have their first monthly meet up on Saturday 6th May 2017 at Cake Plaza next Prestige Plaza, off Ngong Road, at 3pm – 6pm.

They go to schools and talk to girls about Endometriosis. If you would like to invite them to your school, you can send them an Email.

Waiting Wombs Trust

It was founded by Editah Hadassah Trip. You can read her Endo Story and see how the Trust was born.

They have a closed Facebook Page where they walk with women who are waiting to conceive and encourage them.

They will have their first meet up on 17th June 2017 in Nairobi from 2pm at a venue to be confirmed.

If you are feeling overwhelmed and depressed and you would like to talk to someone, please send me an email and I will put you in touch with someone who can walk with you.

Please don’t suffer alone. As always, I am here to pray with you, cry with you and laugh with you, because I believe that one day, soon, we will laugh.

Blessings,

Ess

The Diary Of A Kenyan Endo Warrior: It’s A Bloody Affair

sunset-1

Dear Diary,

As a little girl, I wanted to be a doctor when I grew up. This dream quickly fizzled away where I was in high school because my periods happened, and little did I know, Endometriosis was looming.

Back in primary school, I looked forward to my menarche because it meant I was becoming a woman. Home science lessons on puberty were interesting and I even had a pad bag packed, just to be prepared for the big day.

When my period eventually came, I was taken aback. Here was the blood I had been waiting for, but it was a very different experienced from what I expected. On the first day, I excitedly told my mum it had come and she in turn broke the news to my dad. He barely looked up from his newspaper as she spoke, his reaction was a shrug as he mumbled something in the lines of ‘ahhh, okay’.

As much as I paid attention in class, that valuable information did not prepare me for the reality on the ground. Nope. Not at all. I didn’t know how it should feel, smell, or look. And so I thought that the pain was normal, I was convinced it was normal and I embraced the painful normal.

My periods robbed me of a part of my life. I missed out on school; on fun; on life.

It was a bloody affair. My periods were horrible, the sight of blood grossed me out, the smell repulsed me. Some days I thought I was dying because the flow was so heavy. One pad was not enough to hold the flow, so I learned how to wear more than one pad and use other reinforcements.  The clots, oh the clots, they freaked me out. Nobody told me that chunks of body tissue mixed with blood would come out of me. The first time I saw them I was so scared; after seeing them for a couple of months, I realized that they were my normal, my painful, unsightly normal. Soiling my sheets was a regular occurrence, I didn’t understand how one could sleep and wake up without having an accident. And I hated every part of it. Every. Single. Part. Of. It. Especially the pain and the blood. Because the blood came with sweat and tears. My periods left me drained, upset and bitter. I hated this bloody affair.

Love always,

Ess

 

Calling All Endo Warriors in +254

March is Endometriosis Awareness Month. This March, we have an opportunity to wear a touch of yellow daily and share something with our circles about Endometriosis. The information we share could change a girls life and save her from living in shame and silence.

march-2017

Let us make this invisible disease, visible and audible. Talk, post and tweet about Endometriosis. Dispel the myths about Endo and help other women know that the pain is not all in their heads and they are not alone.

not-the-endo-me

The Endometriosis Foundation of Kenya is hosting a high tea for Endo warriors in Kenya. This is a good opportunity to come meet other Endo warriors, and hear exactly what the EFK is, what they plan to do and how you can plug in.

endo-high-tea

As always, if you would like to share your Endo story to encourage other women living with Endometriosis in Kenya, please send me an email via yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

#TheKenyanEndoStory: Elsie Wandera

yellowendoflower-wordpress-com-2

The second Kenyan Endo warrior sharing her story with us is Elsie Wandera. Hers is a story of pain, hope and sisterhood. After struggling to get a diagnosis, she vowed to help other women know that they do not have to suffer in silence, and they do not have to walk alone. She is the founder of the Endometriosis Foundation of Kenya.

 

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.

file1

 

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 and I remember I was in the shower crying because I could see this brownish flow that I could not tell where it was coming from. My mom then told me it was okay and I remember I had to buy pads and 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 also know that these were formational years for me because 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 and the only way to simplify it for me the Obs/Gyn told me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding and 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 infertility among women. However, this is not a solution but 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 

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 any woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation and I know sometimes I called it “the egg-is-moving day.” I was also 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…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 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 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.

 

Endo changed  my life

I believe out of the pain this journey my life changed and I chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about.

 

Also leading the movement reminds me that I’ve got followers who desire to be resorted as I was and therefore it is ensuring that they have a reference point and encouragement as they journey.

 

Finally, to the world:

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.

carnations

I love carnations 🙂

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. You are a star!! ❤

If you would like to be featured in #TheKenyanEndoStory, please send an email to yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess