Relief or motherhood: Tough choice endometriosis forces on women

Endometriosis disease: anatomical concept illustrating a female infertility condition. [iStockphoto]

On June 26, 2024, Agnes Aluoch Apondo underwent surgery that ended two things: nearly four decades of excruciating pain and her dream of bearing biological children. She had to undergo a hysterectomy, the surgical removal of her uterus.

“Unfortunately, I do not have any children. When I visited gynaecologists, they focused so much on fertility rather than addressing the root cause,” says Agnes, a reverend in the Anglican Church of Kenya.

Ultimately, she chose her health and quality of life over the possibility of motherhood. “I did not know a pain-free life,” she adds.

From the age of eight, as her body prepared for puberty, Agnes experienced severe pain. Her pain intensified during menstruation, affecting her education, work, and overall quality of life.

“Two weeks I was in school, and two weeks out. Even in adulthood, during my menses, it would flow in ways I couldn’t control,” she recalls.

For years, her condition went undiagnosed despite numerous hospital visits, and she was often dismissed or misinformed by medical professionals.

Agnes Aluoch Apondo-Endo Warrior-Reverend of the Anglican Church. [File Courtesy]

“When I was 16, a doctor told me that if I got pregnant, the pain would stop and he could help me get pregnant. He said this when my mother stepped out of the room. I was naïve and confused, told my mother, and we never returned to that hospital again,” she says.

Delayed diagnosis

Her journey towards a diagnosis was long and frustrating.

In 2021, she experienced extreme pain that led to hospitalisation, yet no diagnosis was made. “At the hospital, when the doctor touched my abdomen, I screamed in pain. I was admitted and still they did not diagnose endometriosis,” she adds.

By 2024, her condition had deteriorated significantly, with severe blood loss and weakness. Initial scans suggested large fibroids, and she was scheduled for surgery.

However, during the operation, the surgeon discovered the situation was more complex than anticipated and could not proceed. He referred her to a specialist.

“His name was Dr Yusuf, and I am glad he was genuine with me. He said he would not touch anything inside my belly since the situation was beyond his expertise and referred me to another doctor,” Agnes recalls.

This referral marked a turning point. Under specialist care, Agnes was finally diagnosed with advanced endometriosis.

The disease had spread extensively, causing severe adhesions that fused her pelvic organs and extended to her diaphragm. She then underwent life-changing surgery.

Advocacy work

Her story highlights the consequences of delayed diagnosis, lack of awareness, and inadequate medical responses to women’s pain.

Agnes now advocates for greater awareness, emphasising that severe menstrual pain is not normal and should not be ignored.

She also campaigns for awareness in schools, so that girls can recognise symptoms early.

Caroline Akinyi, an Early Childhood Development (ECD) teacher, was also diagnosed with endometriosis. However, she does not want to lose her womb like Agnes.

Caroline Akinyi-Endo warrior and ECD teacher. [Courtesy]

Her diagnosis was not immediate.

In her twenties, she was placed on various hormonal treatments, including family planning methods, but these only intensified her symptoms.

Eventually, she saw an endometriosis specialist who identified widespread endometriosis affecting her rectum and intestines, alongside adenomyosis.

Adenomyosis is a chronic condition in which endometrial tissue grows into the uterine muscle wall, leading to an enlarged uterus, severe menstrual cramps, heavy bleeding, and ongoing pelvic pain.

Caroline says she should undergo treatment, but cannot afford it, needing around Sh1 million.

“The doctor who can help said they would burn the lesions, but it’s quite expensive. Consultation costs Sh10,000, an ultrasound Sh8,000, and surgery Sh700,000. He does not take insurance,” she explains.

Agnes and Caroline discussed support from family, friends, and support groups.

Doris Muremi started a support system after suffering from both endometriosis and adenomyosis.

Now in menopause and pain-free, she has created a sisterhood. “At Endo Sisters East Africa, we push for early diagnosis and social justice for women living with endometriosis and adenomyosis, focusing on patient education, especially among adolescents,” she says.

Expert insight

Dr Evelyne Muthoka, Consultant Obstetrician-Gynaecologist at MP Shah Hospital, Nairobi, says one of the biggest challenges is delayed diagnosis.

For years, painful periods have been normalised, with many girls and women told that suffering is simply part of being female.

“The principle of ‘getting it right the first time’ is now central: patients should be properly evaluated and, if necessary, referred to surgeons specifically trained in endometriosis, rather than undergoing generalised procedures that may not address the root problem,” says Dr Muthoka.

Endometriosis is a chronic condition where tissue similar to the lining of the uterus (endometrium) grows outside the uterus — on the ovaries, fallopian tubes, intestines, or even the diaphragm.

Unlike normal uterine lining, this tissue cannot exit the body during menstruation, becoming trapped and causing inflammation, scarring, adhesions, and severe pain.

Surgical decisions

Is a hysterectomy the only option? “Absolutely not,” says Dr Raj Dodia, endometriosis expert at MP Shah Hospital, Nairobi.

Dr Raj Dodia, OBGYN, endometriosis specialist at M.P. Shah Hospital, Nairobi. [Courtesy]

He explains that a hysterectomy may be appropriate in specific situations, such as when adenomyosis is the major driver of symptoms, and only after proper counselling. It should be a shared decision, not a first-line offer. “Endometriosis exists outside the uterus; removing it does not remove the disease.

Data shows many patients still experience pain after a hysterectomy if lesions are not excised. Removing the ovaries can lead to surgical menopause, with long-term risks including bone density loss and cardiovascular issues, especially in younger women,” says Dr Dodia.

He adds that surgery is necessary when medical management fails, when structural disease is significant, or when fertility is affected.

Surgery may also be required for diagnosis when imaging is unclear. “Surgery may sometimes be offered before hormonal or pain management strategies. It is overused when superficial ablation is performed instead of excision, leading to rapid recurrence. The gold standard is complete excision by a specialist, done once and properly. More surgery is not always better surgery,” he emphasises.

Dr Dodia says the ‘fertility versus pain relief’ debate is often a false choice.

In most cases, specialist excision reduces pain and improves the uterine environment for fertility.

Priority first

“When I meet a patient, I first ask: What matters most to you right now? Not your family, partner, or doctor, but you. If she is in daily pain and not trying to conceive, pain relief is the priority. Her suffering is not a tolerable price to pay for a future option she might not want,” he says.

If fertility is a priority, it is integrated without dismissing pain. Success is defined by the patient based on goals, such as less pain, return to work, and intimacy without discomfort.

If pain persists, it is not ignored. A comprehensive plan may include re-evaluation, pain psychology, pelvic physiotherapy, or specialist pain medicine.

Endometriosis affects roughly 190 million people worldwide, yet it has historically been normalised as ‘bad periods.’ “This is one of the most legitimate frustrations in medicine. Diagnosis still takes seven to 10 years. That is not just a statistic; it represents years of real lives spent in pain, dismissed and disbelieved,” Dr Dodia explains.

Endometriosis behaves differently in every patient, with no single biomarker consistently elevated.

Experts have also highlighted the psychological impact of endometriosis, noting that years of undiagnosed pain can leave patients emotionally exhausted, sometimes pushing them to the brink.

Research funding follows attention, and for too long, women’s menstrual pain was not a priority. The scientific community is now paying serious attention.

Limited numbers of specialists, high patient loads, and scarce resources continue to impede effective care. Kenya has only 0.2 doctors per 1,000 people, far below the recommended global standard.

The World Health Organisation estimates that 10 per cent (190 million) of reproductive-age women worldwide have endometriosis. Kenya’s recorded numbers appear lower, not because the disease is rare, but because many women remain undiagnosed.