The Endometriosis Battle 

Evans Wekesa,  Nakuru

 On June 3, 2024, Kenyans were hit by a somber mood after the heart-wrenching news of Njambi Koikai's passing hit the internet. The media personality and reggae enthusiast, popularly known as Fyah Mummah Jahmby, succumbed while receiving treatment at Nairobi Hospital after a prolonged battle with endometriosis.

Numerous surgeries and treatments marked her pain-filled journey with endometriosis. Diagnosed with Stage IV endometriosis, her condition included complications such as Catamenial Pneumothorax, which affected her lungs, causing them to collapse repeatedly during her menstrual cycles.

She underwent treatment in the United States after extensive fundraising efforts, demonstrating the lack of specialized care available in Kenya and the high costs associated with its treatment. ​

Njambi's advocacy and public battle with the disease brought significant attention to the plight of women who have endometriosis. Her story is a poignant reminder of the importance of continued efforts to improve diagnosis, treatment, and overall awareness of the condition.​

What is endometriosis?

Endometriosis is a reproductive disorder that predominantly affects women during their active reproductive years, as well as girls experiencing menstruation.

According to the World Health Organization (WHO), endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus, including on the ovaries and fallopian tubes. This abnormal growth can begin with the first menstrual period and continue until menopause. It leads to inflammation and scar tissue formation in the pelvic region.

Some of the distinctive symptoms an endometriosis patient experiences include severe pain during menstruation, sexual intercourse, and urination. Many patients also experience severe pelvic pain, heavy menstrual bleeding, nausea, fatigue, infertility, and sometimes depression.

Endometriosis, in the majority of cases,  is confused with fibroids due to similarity in symptoms. However, the difference occurs where endometriosis forms outside the uterus while fibroid cells grow in the uterus.

Despite extensive research on the condition, there is currently no known cure. Treatment primarily focuses on managing symptoms, often through pain relief, hormone therapy, and, in some cases, surgical interventions.

The exact cause of endometriosis remains unclear, but several theories exist. One theory suggests that it may arise from cellular metaplasia. In this process, cells change from one type to another, developing endometrial-like cells outside the uterus. Another possibility is that stem cells give rise to the condition by spreading through the body via blood and lymphatic vessels.

One of the main complications of the disorder is difficulty getting pregnant or, in some cases, complete infertility. The inability to have children affects not only the victims' mental health but also their long-term relationships.

The need for attention

Data from WHO indicates that approximately one in ten women worldwide (translating to about 190 million people) are affected by this chronic condition. While there is a high global prevalence of the disease, there is very little knowledge about women living with the disease in low- and middle-income contexts, including in Kenya. According to a 2021 study, no specific data exists on the prevalence of endometriosis in Kenya. Another study indicates that about 8.9 percent of women undergo laparoscopic surgery in Nairobi.

Despite these astounding numbers, endometriosis often does not receive the attention it deserves, particularly in developing countries like Kenya. Women suffer in silence, with this statistic reflecting only a fraction of the broader issue. Many cases go undetected, under-diagnosed, or mismanaged due to the normalization of menstrual pain and lack of awareness both among the public and healthcare providers. 

In addition, limited access to quality healthcare and the high cost of treatment hinders many patients from receiving the needed care. There are limited specialized treatment facilities in Kenya, with patients depending on limited Laparoscopic Surgery Services at Kenyatta National Hospital.

Moreover, the cost of managing the disease in Kenya is substantial, with estimates of around KSh 355,000 per year per woman. This figure is out of reach for those living below the poverty line. Only those who can afford the treatment seek medical attention from private facilities or other countries. The problem is further exacerbated by the national health insurance system not covering reproductive health issues fully.

The lack of attention calls for the urgent need for global health initiatives to prioritize endometriosis. This will ensure that all affected women, regardless of their geographic location or demographics, receive the care and support they need in battling this illness.

Each year, March is designated Endometriosis Awareness Month, offering a critical opportunity to learn more about the condition, its symptoms, and potential treatments. However, this should not be the only time this subject is brought to the discussion table.

Stakeholders should develop strategies that will increase public awareness and provide better access to healthcare to improve the quality of life for those affected by endometriosis.