ENDO WARRIORS SPEAK OUT

BIG READ: Endometriosis, The monster silently tormenting women

Despite being as common as breast cancer, it is mired in ignorance and often misdiagnosed

In Summary

•The inflammatory systemic illness affects one in 10 women (176 million globally)

•Symptoms include pelvic pain, infertility, fatigue. It can affect girls as young as eight

A simple task like standing straight is a nightmare to a woman afflicted by endometritis.

The disease forms when the lining of the uterus, called endometrium, thickens to prepare for a possible pregnancy, then thins and sheds by bleeding if pregnancy does not occur.

This hormonal reaction induces inflammation on the endometrium, which then forms outside the pelvic cavity, abdominal areas or the bowel, causing severe pain.

There is widespread ignorance of the disease, despite it being as common as breast cancer. It affects one in 10 women globally, hurting their lives, careers and sex lives.

Currently, no data exists on its prevalence in Kenya. However, the disease is largely unknown, even among doctors, with some misdiagnosing it as dysmenorrhea — painful menstruation that typically involves abdominal cramps.

Biomedical scientist Dr Mutinda Kyama says endometriosis can affect any menstruating woman, from the onset of her menses to menopause, regardless of race or ethnicity.

This month is Endometriosis Awareness Month, and four young women suffering from endometriosis shared their experiences in the hope of raising awareness.

ELSIE WANDERA, 38

Elsie Wandera
Elsie Wandera
Image: COURTESY

At 12 years old, Elsie was filled with excitement about the onset of her periods, one of the signs of womanhood. But three years later, her periods became agonisingly painful.

“Each time I had my periods, it felt like there was a big bubble stuck in my uterus. Like there were needles poking me. There are times I couldn’t get out of bed and I just had to curl myself until the pain subsided,” Elsie said.

Menstruation is a heavily guarded secret for most women due to perceived stigmatisation, but Elsie’s became a public affair. Everyone would know when she was “rolling”. The confined environment at school worsened the situation.

“The entire school community would know, from my fellow pupils to the teachers to the administration. It was something I could not hide and would make me feel very embarrassed.”

Elsie endured the severe period pains for 13 years before she was finally diagnosed with endometriosis at the age of 26.

“After diagnosis, the doctor told me women with my condition were susceptible to infertility. She suggested I needed to get pregnant as soon as possible or things would get worse with age. In panic, I decided to follow his advice.”

Other than pain, endometriosis largely manifests itself through infertility, with up to 50 per cent of women who have endometriosis finding it hard or impossible to conceive.

It wasn’t easy for Elsie to get pregnant; sex was a very painful experience. “I never enjoyed it at all because my uterus was so sensitive and the act of intercourse would only ignite unbearable pain. But because I was scared of not becoming a mother someday, I began nagging my boyfriend about having a baby. But he was not prepared for fatherhood and in a few months, we parted ways.”

Thoracic endometriosis causes lungs to collapse during menstruation.
Thoracic endometriosis causes lungs to collapse during menstruation.
Image: EndoStats

In a June 2018 interview with the BBC, former radio presenter Njambi Koikai, who suffers from thoracic endometriosis, revealed that her medical condition cost her boyfriends because of painful sex. The condition would cause her lungs to collapse every month during her periods.

“To find somebody who understands that and someone who is willing to live with you through that pain is hard. You know having to see you go through pain every single month is crazy,” Njambi told the BBC then. She was on treatment in the US, where she underwent surgery.

According to endostats.com, Njambi and Elsie are among 73 per cent of women whose relationships are affected by endometriosis globally.

For Elsie, she found it unfair that something as special and demanding as pregnancy was now a medical prescription. “A child should be a gift, not a solution to pain,” she said.   

According to Dr Kyama, pregnancy, just like hormonal drug treatments, may temporarily suppress the symptoms of endometriosis, but it does not eradicate the disease.

“Therefore, symptoms usually recur after the birth of the child. Some women can delay the symptoms by breastfeeding, but only while the breastfeeding is frequent enough and intense enough to suppress the menstrual cycle,” he said.

Elsie chose to undergo surgery through a process called laparoscopy to remove the lacerated endometrial tissue causing her untold pain. To her shock, the painless life lasted only six months after surgery.

 “The severe pain came back. When I returned to the gynaecologist, he informed me that the surgery and hormone therapy was not intended to cure endometriosis, but to relieve the symptoms and create a hormonal balance.”  Elsie accepted her condition and resigned to fate.

Graphic description of a laparoscopy.
Graphic description of a laparoscopy.
Image: COURTESY

CYNTHIA KATILO, 24

Cynthia Katilo
Cynthia Katilo
Image: COURTESY

Cynthia was diagnosed with endometriosis at the age of 17, and like Elsie, the doctor suggested early pregnancy. The idea proved insurmountable to the then form four candidate. She didn’t even have a boyfriend. Surgery was her only option. It cost her family Sh300,000. For three months, Cynthia was put on Zoladex Subcutaneous, a drug that also treats cancer patients.

Each injection cost Sh10,000 per month. The therapy came with side-effects: headaches, hot-flashes, spotting and mood swings.

 “I got depressed because the disease was very expensive to manage. I was always fatigued and I did not have energy to work. I could not socialise because of the hormonal therapy that gave me mood swings. I accepted my condition,” Cynthia said.

LULU KAVOI, 28

Lulu Kavoi
Lulu Kavoi
Image: COURTESY

Lulu’s predicament was no different. For a decade, every doctor she went to would dismiss her, saying what she was experiencing was normal cramping.

“I remember I was 24 years old and it took almost 10 years to discover what was ailing me and give it a name. Sometimes I would be told it’s okay, just take pain killers, sometimes I would be told it’s all in my mind.”

To date, Lulu is on painkillers. “I can’t function without getting a jab for the pain. The pain is too much, I can’t even stand straight on my own,” she said.

Dr Charles Muteshi, a fertility and endometriosis specialist at the Agha Khan Hospital, Nairobi, said society, and unfortunately some doctors, have wrongfully normalised pain during periods. Periods should not be painful, he said.

“If there is any deviation from this, one should seek help. Whether the pain is mild or excruciating, pain is not normal,” Dr Muteshi said.

Lulu has so far had two surgeries, but the pain still recurs during her menses. Dr Muteshi said surgery is not always a ‘magic bullet’ since endometriosis does not present itself as a single disease. Other treatments are needed to address issues surgery cannot deal with.

“We have deep infiltrating endometriosis, which requires very specialised surgeons, so if you have inadequate removal of endometriosis, then pain could still come back because mechanisms which are not responsive to surgery haven’t been removed,” he said.

50% of medical practitioners are unfamiliar with the main symptoms of endometriosis.
50% of medical practitioners are unfamiliar with the main symptoms of endometriosis.
Image: EndoStats

JACINTA OTIENO* (not real name), 29

Jacinta underwent a laparoscopy on May 5, 2017. The pain lessened but she couldn’t do heavy chores or bend. Going to the bathroom was a nightmare. 

“I consoled myself that with the surgery, the pain was now gone. But on May 21, I started spotting [mild bleeding that stains the inner garment] and it came with worse pain. It really pissed me off because I was going back to work.”

She regretted having had surgery because she felt it worsened things. “I cried in the office, in the toilet, just anywhere because I could not hold it.” Jacinta went back to the doctor, who then advised her to exercise patience as things would get better once her body adapts to the treatment and the wounds healed.

“This answer kept bringing me down. The pain I felt was not normal for me anymore. I sought a second opinion but still got the same answer. So I chose to accept my situation.”

MYSTERY OF ORIGIN

The cause of the disease is unknown, although several theories have been advanced to explain its probable cause. Pathologist Geoffrey Mutuma said some studies suggest contraceptives may be a risk factor.

“A theory proposed by John Sampson in the 1920s suggests that endometriosis may result from something called ‘retrograde menstrual flow’, in which some of the tissue a woman sheds during her period flows back through the tubes and grows in the pelvic cavity.”

Another theory was proposed by Iwanoff in 1898. It claims the transformation of what’s called coelomic epithelium into endometrial-like tissue may be a cause of endometriosis.

“This theory has been supported by experimental data,” Dr Mutuma said.

Other studies have linked endometriosis to genetics, while others have stated  endometriosis is as a result of immunological abnormalities that allow the cells to implant and develop in some women.

Dr Kyama supported the genetics theory, saying a linkage has been adduced  claiming endometriosis could be inherited or result from genetic errors, making some women more prone to develop the condition than others. “Studies show the risk of endometriosis is seven times greater if the disease has affected a first-degree relative,” he said.

Endometriosis has four stages: stage I (minimal), stage II (mild), stage III (moderate) and stage IV (severe). Ironically, the level of pain does not equate to the severity of the condition. Someone with stage II endo may experience more pain than someone with stage IV.

Bizarre as it sounds, Dr Muteshi said endometriosis can occur in men, although at very negligible levels of less than one per cent. He said it’s not yet understood why, but this could probably be due to “errors” during cell differentiation in response to antigen exposure.

“Some cells may pick up a character to look like endometriosis cells in the male cells. It may be very rare but it’s present.”

Dr Muteshi said men are likely to develop thoracic endometriosis, where their lungs collapse since they don’t experience cyclic menstruation. 

“They might have their lungs collapse, abdominal pains or nodules,” he said. A nodule is a small swelling or aggregation of cells in the body.

The doctor said pain may lessen in women once they hit menopause, but only pain that is responsive to estrogen production.

“Inflammation type of pain may go away but if there is scarring and nerves have been trapped in scar tissue, that may not necessarily get better after the menopause.”

Dr Kyama said most researchers agree that endometriosis is exacerbated by oestrogen. He said hormonal treatments for endometriosis attempt to reverse oestrogen production in a woman's body, thereby alleviating the symptoms.

Treatment for endometriosis in Kenya is estimated at Sh355,000.
Treatment for endometriosis in Kenya is estimated at Sh355,000.
Image: EndoStats

COST OF TREATMENT 

Dr Kyama says no data exists on the cost of endometriosis treatment in Kenya. Misdiagnosis and low information could be a reason.

However, he said studies put the approximate cost of treatment at Sh355,000 per woman per year.

“This breaks down to surgery ( 29 per cent), monitoring tests ( 19 per cent), hospitalisation ( 18 per cent), and physician visits ( 16 per cent),” Dr Kiama said.

Dr Muteshi said it’s unfortunate that insurance firms do not provide cover for the illness.

“So, we are battling with lack of information on one side and barriers to medical access on the other hand,” he said.

According to endostats.com, 176 million women are affected by endometriosis worldwide. Despite this prevalence, endometriosis remains underfunded and under-researched.

Dr Muteshi said plans are underway to establish a centre of excellence at the Aga Khan Hospital that will solely deal with endometriosis treatment.

He said the centre, one of its kind in sub-Saharan Africa, will have multidisciplinary specialists to deal with complications related to endometriosis.

“Cancer has taken the lead and we know that cancer patients who are treated in a specialist centre are likely to recover properly and live disease-free for a longer time. If they are treated by any other specialist who treats cancer once in a while, that prognosis is worse, and endometriosis is exactly the same,” he said.

Other than endocrinologists, biosurgeons and radiologists, the centre will have neurologists, pain management specialists, physiotherapists and specialised counselors, all working in tandem.

“That means as an endocrinologic surgeon, I have a role to treat endometriosis, but I work with colleagues across other fields who have a very keen interest in endometriosis.”

To mark the endometriosis awareness month, the Endometriosis Foundation of Kenya, under the stewardship of its founder Elsie, has organised a walk on March 31 at the Agha Khan Hospital.

All the women featured in this article, who now consider themselves endo warriors, are members of the foundation.

“We will have experts and some of the endo warriors sharing their experiences and the doctors giving their expertise and educating people on what endo is all about,” Lulu said.

Unlike most awareness campaigns, the endometriosis community’s efforts extend beyond advocating for illness cures and funding. All they want is for the society to know the illness exists.

Another warrior said, “I speak up about endometriosis in hopes that by raising awareness, future generations of women don’t have to suffer in the ways we do.”