Endometriosis tormented her every month – and killed her aged 38

Mary Njambi Koikai, better known as Jahmby Koikai, dedicated most of her short life to telling her fellow Kenyans about the debilitating condition of endometriosis, which led to her death this week aged just 38.

As a popular radio host and reggae DJ, she had the perfect platform.

Bravely, she shared her struggles, often calling those in authority to account, demanding better healthcare for women, especially those struggling with the menstrual disorder.

“People really identified with her suffering, with her pain,” fellow activist Doris Murimi told the BBC.

From the tender age of 13, she experienced a regular monthly torment, an excruciating pain that came with her menstrual cycle.

However, it took 17 years to know exactly what she was suffering from and get a proper diagnosis for the condition.

That was because of the lack of local facilities specialising in the treatment of endometriosis.

Endometriosis is a gynaecological condition associated with menstruation where tissue similar to the lining of the womb develops in other areas of the body, including the fallopian tubes, pelvis, bowel, vagina and intestines.

Endometriosis is not considered fatal, but in rare instances it can cause life-threatening complications.

Symptoms include severe to debilitating pain often in the pelvic area, fatigue, and heavy periods.

In rare cases it can also appear in other parts of the body including the lungs, brain, and skin.

Ms Koikai’s was one of those extreme cases, with her condition worsening over the years, especially as her reproductive organs matured.

It affected her schooling, relationships, work and many other aspects of her life.

She recounted to the BBC in 2020 that at one point while in university, she sat an exam but couldn’t write anything because of the pain. She had to repeat some years, delaying her graduation.

In 2015, her lung collapsed from thoracic endometriosis, a rare manifestation of the disease. The condition would recur in subsequent months and years, often requiring specialised surgery.

One of the most enduring images of Ms Koikai is of her in a hospital bed with her upper body heavily bandaged, and many tubes along the right side of the chest.

This was in 2018, when she already had a series of lung collapses and surgeries.

She had been admitted to a specialised hospital in the US and was fundraising for the expensive treatment.

She was weak and in a lot of pain. “I will not describe the pain because I lack words that aptly fit what I’ve been through,” she said at the time.

The condition had ravaged her body. At the US hospital, tissue that had grown because of the endometriosis was removed from her uterus, bowel areas and ovaries.

The biggest challenge, she said, was her lungs.

It had spread so much, partly because of the way it had previously been managed back home that the surgeon in the US could not “believe all what had been done”.

“The scar tissue and the placement of wrong chest tubes [in Kenya] created this mess,” she said.

Despite her many scars, she was still smiling.

Much of her time in hospital was to correct botched surgery due to misdiagnosis

“Deep scars. Raw scars.” As she described it, “each of the scars told a story. I see all I’ve battled. Emotionally. Mentally. Physically.”

Yet she chose to battle her condition with fortitude, while publicly raising awareness of the condition.

Ms Koikai was born in 1986 on the outskirts of the capital, Nairobi.

She was raised by her mother and grandmother, who taught her to be patient and tough in every life’s situation.

She had always wanted to be a broadcaster from early on.

Despite her condition, she managed to complete her university studies and become a popular radio host and a reggae DJ – also known as Fyah Mummah to her fans.

It’s possible that most people in Kenya got to know of the condition because of her.

Five things about endometriosis:

• It affects about 10% of reproductive age women and girls globally

• It is a chronic disease associated with severe, life-impacting pain especially during periods, sexual intercourse and bowel movements

• It has no known cure and treatment is usually aimed at controlling symptoms

• While early diagnosis and effective treatment of endometriosis is important, this is often limited in low- and middle-income countries

Doris Murimi, the founder of Endo Sisters East Africa, a non-government organisation that raises awareness about the condition, was one of the panellists in one of the forums on a local TV station when Ms Koikai first publicly narrated her story.

She said that until then, many people did not seem to understand endometriosis, even when her organisation went out to train and talk to people.

After that, “she was always the reference point, so basically she really was the face of endometriosis awareness in this country”, Ms Murimi told the BBC.

Endometriosis affects about 10% (190 million) of women and girls of reproductive age globally, according to the World Health Organization (WHO).

There is no known cure, so treatment is usually just controlling the symptoms.

But Ms Koikai admitted that the “biggest challenge” for people with endometriosis was “misdiagnosis and with this comes botched surgeries, wrong medication”.

That’s what she had gone through, she said, with doctors having to deal with the damage caused due to misdiagnosis before managing the disease.

She stayed about two years in the US while doctors treated her.

Then and through the years that followed, she chronicled her experience, which made many people engage and identify with the condition.

Ms Murimi believes that by living and sharing her story, Ms Koikai had moved the country to understand what was a complex thing to comprehend.

Many other people have paid tribute to her strength in speaking up for women suffers from endometriosis.

Comedian Senje, who also has the condition, says the encouragement she received from Ms Koikai was invaluable in her own struggle.

“You gave me strength every single time I felt like giving up, I looked up to you because I believed if you made it then I would too… My heart is broken,” said the comedian whose real name is Sylvia Savai.

Dennis Itumbi, a strategist in Kenya’s ruling coalition, noted Ms Koikai’s efforts to create awareness even up to her last days.

“In your final days, you pushed to understand and raise awareness about the dilemma many girls face – thoracic endometriosis. You died educating and motivating me,” he wrote.

On 20 May, she put up her final post on Instagram addressed to President William Ruto, calling for better access to health “for millions of women battling endometriosis in silence”.

She died two weeks later in a Nairobi hospital from complications linked to the condition.

In the end, her life, her struggle and campaign made a difference.

“A lot has changed, thanks to Koikai,” said Ms Murimi, noting that since last year, there was “an endometriosis centre…and we have like two or three top specialists”.

But the fight to address menstrual disorders will continue, she said.

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