Endometriosis: A struggle between pain and infertility for Kenyan women

March is endometriosis awareness month, but for the estimated 200 million women who live with the disease, dealing with it is a battle they fight daily.

Leah Mwandoe, a student at KCA University in Nairobi, was diagnosed with the disease about five years ago, after six years of showing symptoms.

"I first had my period when I was 12 while still in primary school and from the beginning it was painful. I used to have a heavy flow and cramps. My legs would feel pain and numbness, and I would miss school for about a week every month."

Nobody around her understood what was happening. Her mother would give her painkillers to ease the pain during her periods.

"It would help sometimes, but we didn't know what was happening, so we kept managing the pain, hoping it would go away with time."

Missed classes

However, the pain progressed through high school, and she would miss her classes for a week every month as she was hospitalised.

"The pain was unbearable and I would get shots of painkillers. At times I would get admitted to hospital and get shots of painkillers every six hours."

In 2018, when she was in Form Four, the now 23-year-old visited a gynaecologist for the first time.

The doctors said it was possible she had endometriosis.

"This was confusing because we had no idea what the disease was all about. However, we were relieved because we knew the doctors would handle it," Ms Mwandoe said.

Endometriosis occurs when the tissue normally only found in the uterus migrates to other locations in the body, said Dr Charles Muriuki, a gynaecologist at MP Shah Hospital.

The tissue may end up in the fallopian tubes, ovaries, uterosacral ligaments, peritoneum, bladder, vagina and sometimes even in the rectum, intestines and appendix.

Severe pain

Sometimes the pain is so severe that it can cause sufferers to lose consciousness, making the simple act of breathing unbearable.

After her diagnosis, Ms Mwandoe started on pain medicines and hormone injections. After trying a few combinations for about a year, her doctor settled on Visanne.

Visanne contains the progestogen hormone dienogest. Taking one Visanne tablet daily shrinks the endometrial tissue and reduces associated complaints such as pelvic pain and painful monthly bleedings.

For two years, the medication worked for Ms Mwandoe. But the painful cramps started again. Being in school in Nairobi, she started seeing another doctor at MP Shah Hospital. After tests, her doctor recommended laparoscopic surgery.

Laparoscopic surgery is a technique in which short, narrow tubes (trochars) are inserted into the abdomen through small (less than one centimetre) incisions. Through these trochars, long, narrow instruments are inserted. The surgeon uses these instruments to manipulate, cut, and sew tissue.

Underwent surgery

Ms Mwandoe underwent surgery in July last year, and deposits of endometrium were removed from outside her uterus.

"After the surgery, I am now in a much better place, the pain has slightly reduced and I am able to manage the pain with painkillers. Also, my period now takes about a week, unlike in the past when it would go up to even six weeks."

Each endometriosis story is as unique as a fingerprint and for Ms Mwandoe, the disease affected every aspect of her life.

With her periods lasting over a month, she locked herself indoors because of the discomfort. She also worried that the bleeding would leak when she was out of the house because sometimes it would be a heavy flow.

Her social life suffered. She barely had any energy, and the pain made the situation worse.

"In school, life was tough because I had to miss a whole week every month. There was a lot of catching up to do and this would stress me up. I would come back to school and find the others had already covered two topics and I would have to catch up."

In between her treatment, Ms Mwandoe had tried other gynaecologists and herb medications, but none seemed to work.

Still learning

The counselling psychology student said that although she has had endometriosis for 11 years, she is still learning more about it.

It takes 10 years on average to get a diagnosis from the time a woman starts noticing symptoms, says the Endometriosis Foundation of America.

In Kenya, it might take longer to diagnose endometriosis but more women are coming out to seek treatment, said Dr Muriuki, the MP Shah Hospital gynaecologist.

"People are becoming more aware of the disease itself. There is more information on the internet and people read it. Sometimes a patient comes and says they think they have endometriosis and they give their reasons and this has made the number of endometriosis cases rise," he added.

Advances in technology, like laparoscopic surgery or keyhole surgery, have also helped.

Whichever means one uses to treat the disease, it's always expensive.

"There is pain relief, hormone treatment and laparoscopic – the cost is prohibitive. The cost of setting up the surgery and the cost of training and setting up a team to handle endometriosis does contribute significantly to the cost of treatment," Dr Muriuki added.

Endometriosis affects young girls in puberty to women past menopause.

"We can have young girls at the age of puberty presenting signs and symptoms of endometriosis,” he said.

“Provided their menstrual cycle has begun, endometriosis can present itself. This condition has always been thought to stop at menopause, but sometimes this is not the case because the disease itself, having deposited in other areas of the pelvis, can still cause-effect because there is still some level of estrogen even in women who are past menopause."

Ms Mwandoe and many other women who have the disease think it is normal to have painful periods.

Watch out for signs

But Dr Muriuki advises women to watch out for signs like pelvic pain as it is the most common symptom of endometriosis. In many cases, the pain coincides with a woman's menstrual cycle and in others, the pain can affect a woman daily.

And, devastatingly, pain is not the only result of the disease. Endometriosis can also cause infertility in 30-40 per cent of the women who have it.