Survivor: What it’s like living with endometriosis 

“It has been 10 years since I got a diagnosis for endometriosis. My menstrual journey has been a wild rollercoaster. I've had horrible moments, deeply desired menopause, been thrust into menopause, hated it, enjoyed the pregnancy holiday, and slowly learned to love my periods,” she adds. 

According to the Health Line website, endometriosis is a disorder in which tissue similar to the tissue that forms the lining of the uterus grows outside of the uterine cavity. The lining of the uterus is called the endometrium.

Endometriosis occurs when endometrial tissue grows on the ovaries, bowel, and tissues lining the pelvis. The hormonal changes of the menstrual cycle affect the misplaced endometrial tissue, causing the area to become inflamed and painful. This means the tissue will grow, thicken, and break down. Over time, the tissue that has broken down has nowhere to go and becomes trapped in the pelvis.

“My periods have always been hellish. These days, I use soft and flowery words to describe my period.,” she says, adding that the memories of the pain she underwent give her goosebumps to date. 

When she was diagnosed with endometriosis at only 20, all she wanted was relief from perpetual pain and infections.

Despite suspecting all along that her condition was abnormal, she was not prepared for her discovery when she underwent a laparoscopy at a Nairobi hospital.

“I discovered I had endometriosis when I was 20 years, during my second surgery to investigate rampant pain and infections.”

They found that the endometriosis was fusing with her left ovary and large intestines.
Before her daunting discovery, she would experience searing pain each time during ovulation and menstruation.

So agonising was her pain that her life was turned upside down, and she almost cut short her university education.

“My periods were excruciatingly painful, the pain began to disrupt my life during university. I struggled to get to class and even study. It was so hard.”

Extraordinary pain 

“It was more than just period pain. It was also the ovulation pain that left me at a bereft. I had to be rushed to the emergency room severally for pain management.”

She endured her painful ordeal for years being constantly convinced that it was only a state of mind. That the pain was simply a creation in her head.

Being the fighter that she is, she braved the pain silently and went ahead to be elected to the student government at USIU.

In the quest of seeking remedy for her situation, she took countless birth control medications which despite alleviating her anguish, brought with them additional new miseries, including early menopause.

“The side effects of these drugs were very intense. They took away the period pain, but opened other doors of pain,” she recounts.

“I lost so much to endometriosis. It is the silent thief that steals your peace of mind, your ability to think or perform as you used to. “

Fortunately for her, she had a supportive family and a considerate employer who gave her a glimmer of hope when she felt like her world was crashing.

“Endo is a whole-body disease. It affects a woman's whole life. I'm grateful that my employer was so understanding and allowed me to stay home when I needed to. I felt so guilty. It was like my body was failing me.

“It was a heavy burden for my family to see me struggle with this invisible disease. My boyfriend then saw my worst days also saw my worst flares and was supportive,” she reminisces.

Thanks to her corporate insurance cover she was able to undergo her three surgeries at a major Nairobi hospital without a  financial hitch.

“When I finished university, I struggled to get the same care under the private covers. Endometriosis is very draining physically, emotionally and financially too,” she adds. 

Even after the surgeries, constant infections with cysts saw her continue knocking at various hospitals in the country several years later for consultations and medication.

Her journey to motherhood was marred with eventful pregnancies, bleeding among other issues.

Despite not being able to have a vaginal delivery, Esther is forever grateful that she was able to conceive smoothly and she is now a proud mother of three lovely girls.

Endometriosis has no known cure and the only hope is excision surgery. That has not dimmed her hopes but only served to invigorate her resolve even further to combat the malady. 

Her journey to recovery has been gradual and a culmination of various factors including a supporting spouse, a mother’s affection and the will to protect.

“I have three daughters, and they fuel my passion to share more. I pray that they will not go through the pain I went through. That is one of the things that weighs heavily on my heart.”

Yellow Endo Flower

Determined to spread awareness, rescue women from the agony she knows only too well and prepare young girls for puberty, the mother of three started Yellow Endo Flower in 2014, when she got her second daughter.

Yellow is the colour of endometriosis awareness and a flower represents blooming wherever you are planted.

Through her most intense pain, Esther’s passion was birthed and she metamorphosed into an exuberant endometriosis activist.

She looks back at the person she was over 10 years ago and this time around she can only shed tears of joy at what she has become.

“I’m looking back at this girl and wondering who she was. The journey changes you, as it does, you slowly unfold into a masterpiece. Pain fades away and you have the privilege of hindsight.
“Back in 2014 when I decided to start sharing my story, I didn't think that it would impact so many and be part of a global voice, creating awareness about Endo.” 

She is determined to keep telling her story, to demystify the myths to each girl who has been made to believe that the pain is all in her head.

Social media platforms, above the line media in interviews, on the ground through training and teen coaching are her main channels for spreading awareness about endometriosis.

Using her online coaching programs, she has reached hundreds of women and girls in schools and universities.

“I genuinely enjoy talking about menstrual health. Everything from menarche to menopause. Periods are beautiful. I didn't always believe it, because my journey was filled with a lot of pain. But now, I see it, and I believe that knowledge has played a big role in my epiphany,” she says with a smile.

The menstrual health advocate has written over five books the first one in 2017 dubbed Bloom which teaches girls how to keep a period diary and the second one in 2019, Furaha Blossoming with Joy, among others.

“I am passionate about equipping girls and women to navigate their menstrual health journeys. After doing the general training, I wrote my first book Bloom, to teach girls and women how to keep a period diary. This is an important practice that every girl and woman should adopt,” she states.

She cautions that when it comes to treating endometriosis, the importance of details cannot be overemphasised.

“The details matter! One wrong definition can put a woman through needless pain. Surgeries are not scout badges that we carry with pride, they are, sometimes, painful reminders of one more thing that didn't work. Reminders of broken dreams and fractured hopes,” she states.

She created Furaha Program in 2020 which targets girls from Grade 4 to Standard Eight to prepare them for puberty. 

The program which consists of 10 sessions that “break down puberty, bustmyths, share truths, and offer an opportunity for girls and their mums to bond.”

“This class is ideal for them. It is a fun way to keep them busy as they learn more about their bodies and puberty,” she elucidates.

She is not only passionate about the wellbeing of the girl child but she is also determined to mentor young boys through her Kito program.

The Kito program, as she explains, provides a haven for adolescent boys to express themselves about challenges their encounter regarding puberty, sexuality among others.

“The Furaha and Kito program offer safe spaces for girls and boys respectively, to make new friends, ask questions and to learn about their bodies and puberty,” she says.

Recently, while working with women, Esther discovered a niche and being ever zealous, she created Menopause Talks Kenya.

“Menopause Talks Kenya is aimed at equipping women and offer them support as they navigate menopause. We had two physical events in Mombasa before the Covid-19 pandemic.”

According to the latest figures, endometriosis affects 1 in 10 women.

The condition was barely known 10 years ago not only in Kenya but in the larger part of the world.

There was little information about it and victims had to bear the pain silently. If Esther has anything to do with it, women will never suffer in silence again. 

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