Thirty-five-year-old Elsie Wandera had to endure severe period pains every month for 13 years before she could find out what was wrong.

While in high school, the pains made her miss innumerable classes and in campus she was accused of “feigning illness just to attract attention”.

The Communications graduate lived with the condition popping painkillers and taking injections every time the pain became unbearable.

At the age of 26, though, during a visit to a gynecologist, Ms Wandera was diagnosed with endometriosis after undergoing a surgical procedure known as laparoscopy.

“I recall the easiest way he (gynecologist) could explain the condition to me and help me come to terms with what was going on was that ‘your uterus is growing inside out’.  I laughed at that description and for a moment dismissed it as though it was nothing,” Ms Wandera told Nairobi News during an interview last Wednesday.

It was after the diagnosis that the gynecologist surgically removed an ovarian cyst that was growing on her right ovary as a result of the disease.

“I was then put on hormonal therapy, Zoladex subcutaneous, to serve as hormonal therapy for six months, which had menopausal side effects like headaches, hot-flashes spotting and mood swings.  The drug cost me Sh27,000 per month. Luckily, I had a medical cover although I required their approval every month before I got the drug from the pharmacy,” narrated Ms Wandera.

WHAT IS ENDOMETRIOSIS?

But just what is endometriosis?

According to a Nairobi based consultant obstetrician gynecologist, Dr Wanjiru Ndegwa, endometriosis is a chronic debilitating disease that affects some women.

As a result, innumerable Kenyan women are suffering silently – some unknowingly – as a result of endometriosis whose symptoms of painful periods are at times assumed to be “normal” for women of reproductive age.

There are no statistics available locally as women are afraid of speaking up but doctors say diagnosis has been made on many Kenyan women while some are unable to afford a laparoscopy hence remain undiagnosed. Global statistics indicate that one in 10 women suffer from the disease and are sometimes misdiagnosed.

“Endometrium is the layer that is in the uterus so endometriosis means that the endometrium layer that bleeds out into the cervix has moved to areas outside of the uterine cavity,” said Dr Ndegwa.

Some of the symptoms include painful periods and pain during sex and its diagnosis is a laparoscopy.

“This is where we go into the belly button… and check for spots of endometriosis in the abdominal cavity,” Dr Ndegwa explained.

The fertility expert added that there is a hormonal treatment in the form of injections or pills, which may be used to reduce the inflammation and cause the endometriosis to shrink.

In Ms Wandera’s case, she was put on hormonal treatment for six months but the pain got worse and she would miss work for up to two days a month.

TREATMENT

She was then put on a different treatment for another six months, whose side effects were now manageable, this helped reduce the period pains.

“On September 29, 2014, I had my second laparoscopy at the age of 34 to remove another cyst on the left ovary.  This procedure cost me Sh300,000 including doctor’s fees,” recalls Ms Wandera.

“However, my insurance company had set a limit of Sh150,000 as it is categorized as a Chronic/Recurring Illness for which they set a cap and I needed to raise difference by the next day. I raised Sh200,000 from friends and family which covered the procedure and the post-operation treatment for six months.”

Dr Mutinda Kyama, a biomedical scientist who is studying the pathogenesis of endometriosis, says the cause of the disease is unknown but several theories have been advanced to explain its probable cause.

“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 that a woman sheds during her period flows back through the tubes and grows in the pelvic cavity,” says Dr Kyama.

The study is similar to others that suggest that retrograde menstrual flow is a universal phenomenon among women of reproductive age but does not explain why the tissues survive in some women, but fail in others.

“Another theory proposed by Iwanoff in 1898 claims that the transformation of what we call coelomic epithelium into endometrial-like tissue may be a cause of endometriosis. This theory has been supported by experimental data,” notes Dr Kyama.

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

HEALTHIER LIFESTYLE

“Some studies have pointed out environmental factors like toxins may contribute to the development of endometriosis, though this theory has not been confirmed and remains controversial,” says Dr Kyama.

Ms Wandera, who after the second laparoscopy in 2014 has had painless menstrual periods, adds that she has had to change her lifestyle.

“I had to make some decisions about what I eat after researching the different diets that ease the pain.  I chose to live a healthier life by eating less red meats and cut down on wheat products and go gluten free,” she said.

According to Dr Ndegwa, diet and exercise are part of the treatment and are very important for patients as some pains have significantly reduced just by patients going off wheat products.

“I can’t say this enough, that our diets really make a difference, we never used to see endometriosis in the past. Actually, it was thought to be a white person’s disease as it was mostly in Europe but, interestingly now, we are seeing it more in upper class unfortunately and that is because our diet is poor and we don’t exercise,” warns Dr Ndegwa.

Ms Wandera’s experience and lack of a diagnosis for 13 years led to her founding the Endometriosis Foundation of Kenya in October 2014.

“We successfully held a forum with other partners on March 5 this year as March is the endometriosis foundation month and 25 women came to the interactive event where experiences were shared and health advice given,” she stated.

The foundation is open for all women who have either been diagnosed or are exhibiting the symptoms.