Endometriosis: When menstruation is a monthly cycle of intense torment

For Esther Wambui, periods have never been simply about a few uncomfortable days each month.

The pain could become so severe that she would vomit, feel dizzy and struggle to remain standing. At school, she sometimes used an entire packet of sanitary towels in a day and still worried about leaking and staining her clothes. The symptoms began when she was about 12, but it took nearly six years before she understood that the pain was not normal.

“Cramps were so painful, I felt dizzy and would vomit,” Esther says.

Her periods eventually became so disruptive that hospital visits became part of her routine. She was diagnosed earlier this year with endometriosis and adenomyosis after years of symptoms and initially normal scans.

Esther says she first heard more about endometriosis during the awareness month earlier this year, after listening to a doctor explain that painful periods should not simply be considered normal.

She spoke to her parents and sought medical attention. Her initial scans showed nothing but a friend later connected her to another facility where a different scan raised the possibility of the condition. By then, she had already spent years living with unexplained pain.

The diagnosis finally gave a name to what she had been experiencing, but it did not immediately make the pain disappear.

She started treatment soon after, first taking Endogest for about three months. The side effects became difficult to tolerate and her treatment was changed. In August, she had a Mirena coil inserted.

Esther, now 18, is in Form Four and had to stop attending school physically because of the pain and her body’s adjustment to the treatment. She is currently homeschooling as she prepares for her Kenya Certificate of Secondary Education (KCSE) examinations.

“The pain is just too much and I’m still struggling with it. My body has not gotten used to the object in me,” she says.

Her mother, Mary Wanjiku, has watched the struggle from close range.

Mary says she first noticed how severe her daughter’s periods were about seven years ago. What followed was a cycle of pain, emergency hospital visits and watching her child receive injections simply to get some relief.

“I felt so broken as her mother, having to rush her to the hospital every month during her periods and watching her get pain injections made my heart hurt,” she says. Sometimes the family would remain in the hospital for hours and on other occasions, they would spend the entire day there. According to her mother, the injections helped reduce the pain, but only temporarily.

“Occasionally the pain would be triggered even before the period came,” reveals Mary.

Their hospital visits became so frequent that she developed a familiarity with the doctors and staff.

“The doctors became my friends because of the number of times we frequented the hospital. It got to a point they knew me by name,” she says.

Financial burden

Alongside the emotional toll came the financial burden. Mary says Esther’s condition often presents as an emergency, leaving the family to find money they had not planned to spend.

“The financial part is even worse and to make it worse, her situation always comes as an emergency and the least I’ve used during one hospital visit is Sh10,000,” she says.

The condition has affected the entire household. Mary says Esther’s siblings have also been traumatised by watching their sister go through severe pain.

“Seeing her go through that pain as a loved one is not something that you can easily take,” she says.

Now, Mary’s biggest worry is that the condition could interfere with Esther’s education since it is the third term of Form Four but the candidate remains at home as she tries to manage her health.

“I’m so worried about her schooling because it’s third term and she’s still home. I’m worried this might affect her studies but I’m praying for the best,” Mary says.

Esther’s experience illustrates one of the ways endometriosis can quietly take over the lives of young women, beginning with pain that may be dismissed, before eventually affecting school, family life and emotional wellbeing.

Esther is not the only woman whose life has been reshaped by the condition.  For 27-year-old Phostine Anyango, the journey began with periods she initially considered manageable.

She started menstruating at 15 while in Form Two and was experiencing cramps, but medication from the school nurse provided some relief. Even then, the pain was not ordinary.

“I could take Buscopan tablets given by the school nurse and it relieved the pain a bit. Though it wasn’t a normal pain, as some people may describe, because in a day, I used three to four tablets,” she says.

The turning point came in 2019 when she experienced such severe pain that she was vomiting and could barely stand because of the pain around her waist. She was admitted to a hospital and given injections. The pain thereafter reduced slightly, but from that point, her periods became increasingly difficult.

“I’ve always ended up in the hospital on my days and yes, I suspected it was not normal but I was too afraid to confirm the diagnosis,” she says.

Instead of immediately seeking specialised care, she tried remedies recommended by people around her.

She used traditional herbs and followed advice from her mother’s friends and neighbours.

Some people even suggested that she should conceive because they believed pregnancy would reduce the pain.

In 2025, a friend who had been with her through many of the painful episodes insisted that she seek a proper medical assessment and she eventually visited a gynaecologist, underwent several tests and was diagnosed with endometriosis.

The diagnosis was devastating.

“I was really hoping it wasn’t because at the time I was visiting the hospital, I had read about it and heard about it online. I had even seen the stories and, honestly speaking, they were scary,” she says. “When my fears were confirmed, it broke my heart, but what could I do?”

Phostine has since been in treatment and has undergone one surgery, but the pain has continued. The financial burden is one of the aspects she finds hardest to manage. “When it flares up, you end up spending even money you had not planned for,” she says.

The condition has also affected her work because she spends at least five days every month in the hospital.

Beyond work and money, Phostine says endometriosis has also changed how she thinks about relationships. Many of her peers are married or have found partners, but she fears that she may never find someone who will be willing to take on the burden that comes with her condition, adding that the experience has made her withdraw into herself.

“It’s already enough that my friend and family take care of me when it flares up. I wouldn’t want to drag another person in it,” she states.

Dr Khushbu Patel, an obstetrician-gynaecologist at Third Park Hospital, says what women such as Esther and Phostine experience is consistent with a chronic condition that can affect multiple parts of the body and significantly disrupt daily life.

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus. It can affect the ovaries, fallopian tubes and pelvic lining, and in some cases can involve organs such as the bowel, bladder, diaphragm and lungs. The tissue responds to hormonal changes associated with the menstrual cycle, leading to inflammation, scarring and adhesions.

Globally, about one in 10 women and girls of reproductive age are affected, according to Dr Patel, although Kenya lacks comprehensive population-level data. Dr Patel also says severe menstrual pain should not simply be accepted as a normal part of being a woman.

“Severe pain that prevents school or work or isn’t relieved by standard analgesics should be a red flag,” she cautions.

One of the biggest challenges remains getting the correct diagnosis.

Dr Patel says symptoms can overlap with other conditions, including irritable bowel syndrome, pelvic inflammatory disease, ovarian cysts and ordinary menstrual pain.

“International data suggest average diagnosis takes about seven to 11 years,” she says, attributing the delay partly to the normalisation of period pain and the overlap between symptoms of endometriosis and other conditions.

The World Health Organisation (WHO) says the average time to diagnosis globally is between four and 12 years, with delays particularly common because symptoms can vary and may not be easily recognised.

According to WHO, diagnosis can be based on symptoms and imaging such as ultrasound or MRI, and surgery is not necessarily required before treatment is started.

There is currently no cure for endometriosis. Instead, treatment focuses on controlling symptoms and limiting long-term effects. Depending on the individual, this may include painkillers, hormonal treatment and surgery.

Dr Patel says treatment has to be tailored to each woman, taking into account her symptoms, fertility plans and quality of life.

“If pain persists despite effective hormonal therapy and pain management, if there are large endometriomas, deep infiltrating disease affecting bowel, bladder or ureters, or anatomical disease impairing fertility, then surgery may be considered,” she says.

But treatment can be a long-term commitment. Dr Patel warns that symptoms often return when hormonal suppression is stopped because the underlying disease remains.

For many Kenyan women, she says, the financial burden makes the prolonged treatment difficult.

“Long-term hormonal therapy and surgery cost money,” she says, adding that the cost of care and limited understanding of hormonal side effects can lead women to disengage from treatment. WHO notes that endometriosis can have significant social and economic consequences. Some women experience pain severe enough to keep them away from work or school, resulting in lost income, while treatment may require out-of-pocket spending.

Mentally affected

Dr Patel says endometriosis is found in a substantial proportion of women experiencing infertility, although having the condition does not automatically mean a woman will be unable to conceive.

She also says the impact extends beyond physical pain.

“Endometriosis affects school, work, career progression, sexual relationships and mental health,” she says.

For Esther, the consequences have already reached the classroom, whereas for Phostine, they are in the workplace and her personal life. For Mary, the consequences affect the entire family.

And behind each experience is the same struggle: trying to distinguish between what society tells women is ordinary period pain and what their bodies are actually telling them.

Esther says people need to understand that endometriosis is not simply about having painful periods. She experiences pain even on days when she is not menstruating, with symptoms becoming worse during her periods. The condition has also affected her mentally, especially when people dismiss her pain or suggest that she is pretending.

Phostine hopes other women do not wait as long as she did to seek answers.

“I’m hoping more endometriosis awareness is spread and it gets to many people so they know and understand that painful periods are not normal; extreme cramps are a cry for help,” she says.

Her advice is simple: “Listen to your body and not to people; go get those tests done early so you can know what you are dealing with.”

For women who have spent years being told to endure the pain, recognising that it is not normal may be the first step towards getting an answer.