“The worst misconception is that the pain is in my head, even from medical practitioners. This really messed me up mentally. I would love to see more awareness, even among doctors, on the true facts about endometriosis.”

This is the account of Mary Gichuki, a twenty-something-year-old woman in Kenya who has lived with endometriosis for more than a decade now. Prior to her formal diagnosis, Gichuki had been dealing with her painful periods unaware and uninformed. She had been in and out of hospitals, put on various, sometimes inaccessibly costly medication, all in a bid to alleviate her pain. Nothing seemed to work until she had a laparoscopy done as a last option. The tests revealed the root cause of her problems: endometriosis.

What is Endometriosis?

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According to the Endometriosis Foundation of Kenya, endometriosis is a condition where endometrial cells, cells lining the womb, are found elsewhere on the body. This could be the vagina, ovaries, and, in rare cases, the heart and lungs. This means these cells break down each month, the same way as those do in the womb, except the former have no way of being released, leading to a build-up. Thus, they are trapped and, over time, compile into cysts, adhesions and scar tissue. These, in turn, cause heavy menstrual cramps and bleeding, along with debilitating pelvic and lower back pain. Women who experience this may also suffer from pain during sex. In the most severe cases, the condition can lead to infertility.

“a lot of women are suffering in silence, believing their pain is normal”

Not to be confused with Fibroids

In most cases, endometriosis is confused or conflated with fibroids due to overlapping symptoms, such as pelvic pain, infertility, growths, and heavy menstrual bleeding. But the main difference is where the two form; fibroids form in the uterus while endometriosis is characterised by cells forming outside the uterus. Existing data shows that 1 in 10 women is living with endometriosis. This data might be flawed as it is only based on women who have come forward on their diagnoses. In truth, a lot of women are suffering in silence, believing their pain is normal. On the flip side, some doctors are not actually listening to them and providing inaccurate diagnoses, like in Gichuki’s case.

Life with the disease in Kenya

In a recent speech with Engage Talk, Njambi Koikai, a media personality opened up about her lifelong fight with endometriosis, which for the majority of the time, she had been dealing with due to many misdiagnoses. It was not until she suffered a lung collapse during her menstrual cycle that her endometriosis was confirmed, aged 23. The type of endometriosis Koikai was suffering from, however, was Stage 4, the most severe.

What followed was a long journey of finding specialised treatment and care. A major hurdle in Koikai’s case, as it is for most endo survivors, is the lack of readily available resources to deal with the disease. In Kenya, the medical system is more familiarised with fibroids, leading to many misdiagnoses, ineffective treatment and delayed detection. Kenya’s National Hospital Insurance Fund (NHIF) is also biased against reproductive healthcare needs, failing to cover treatment for any conditions under this category besides maternity services. This means that the effective handling of conditions like endometriosis, even when they are finally and correctly identified, is largely inaccessible for women in a country where 26.3% of workers live in extreme poverty. Koikai, for example, had to rely on crowdfunding and personal donations to pay for her hospital bills, which included two invasive surgeries to remove the cysts and dead tissue surrounding her lungs.

Aside from this, Koikai was also forced to contend with social stigma, and states that her ex-boyfriend ended their relationship as a result of her condition.

“Crippling pain is not normal. Get a second, third, and even fourth opinion to find out the root cause”

Vivian Odumbe, another endo survivor, narrates her journey with endometriosis. She has lived with endometriosis for nearly twenty-six years. In those twenty-six years, she has had children and was even assured that the pain would lessen once she gave birth. That was not the case. In fact, she underwent her worst bouts of physical trauma following childbirth, having to undergo nine surgeries to combat the tissue build-up. Her work life also suffered, as a result, being forced to take leave when the discomfort was too crippling. On days she could make it in, she went armoured in a layer of protective clothing: a maxi pad, two pairs of underwear, tights, biker shorts and trousers.

Odumbe recounts how these extensive measures were still not enough: “Even so, I would be completely soaked thirty minutes in. I would use up to sixteen pads in a day. During these days I was unable to board matatus as I feared to soak the seat red. I would, therefore, call a taxi, then place a lesso or scarf and a newspaper to protect the car seat from getting soiled.”

Being mindful that this is taking place in the equatorial heat, we can only imagine how burdensome this experience must be. The Kenyan healthcare system and employers must become more female-centric.

Speaking to Gichuki, she echoes Odumbe’s ordeal, intimating that she walks around with her pillow during her menstrual cycle when she has to attend classes, as that’s the only thing comfortable enough and strong enough to soak up all the blood. We were floored and realised, like many people, we did not fully appreciate the full scope of this condition.

For Odumbe, her reprieve came when she had an excision surgery abroad in Romania, as Kenya still does not have the necessary resources to facilitate the treatment. Koikai also went abroad to the US for her surgeries, as advised by the Kenyan doctors she spoke to.

So, what next?

The healthcare infrastructure in Kenya needs to expand and modernise to accommodate the complex needs of reproductive health, which affects half the population. Like most African countries, Kenya experiences period poverty, meaning access to many life-changing services is severely limited for most Women. Even sanitary towels can be considered a luxury in the most marginalised areas.

Currently, only Kenya Laparoscopic Surgery Services (KLASS), a private medical entity, offers surgery for endometriosis (stages 1 to 4) and other reproductive-related issues. However, Kenyatta National Hospital, the biggest referral hospital in the country, offers endo support for more mild cases, performing some laparoscopies at a much more affordable price – though this is still out of reach for those below the poverty line or without insurance.

“we should strive to end endometriosis stigma – socially and institutionally. The more we talk, the more we learn”

No specific data exists on endometriosis in Kenya, indicating its erasure from public and institutional forums. More Afrofeminist data is required in order to assess the true extent of this disease in both Kenya and across the African continent, as well as produce better and more widespread solutions. As it stands today, there is no known cure for endometriosis, only disease management treatments, ranging from hormone therapy to surgery – none of these guarantees a complete eradication of pain. Though, one thing is clear; crippling pain is not normal. Get a second, third, and even fourth opinion to find out the root cause. In the meantime, we should strive to end endometriosis stigma – socially and institutionally. The more we talk, the more we learn.

Written By: Esther Musembi – a writer, blogger, editor and member of Writers Space Africa-Kenya. For more of her work click here. Follow her on Instagram and Twitter @EssMusembi.

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