“I am living with endometriosis. I was born with it.  Living with endometriosis is a challenge. Your doctor just tries to treat the symptoms and assumes the pain revolves around your menstrual cycle. But this pain affects every single aspect of your life” the then 47-year old celebrity, Nike Oshinowo, had said in 2013

Until  the former Miss Nigeria, made the startling revelation that she has been living with Endometriosis since age 13, few Nigerians knew about this mystery disease which knocks off its sufferers with pains every month and in many instances, alter their fertility profile.

Endometriosis is a condition where the endometrium, the mucosal lining usually found in the womb which build up and is shed monthly during menses, is found outside the womb in other locations such as the ovaries, the fallopian tubes, the utero-sacral ligaments, and the Pouch of Douglas, resulting in internal bleeding, inflammation of the surrounding areas, and formation of painful adhesions and scar tissues.

Most sufferers of endometriosis, apart from complaint of severe pelvic pains and abdominal cramps which during their monthly periods keep them in bed away and from work and other activities, experience dyspareunia (painful intercourse),  ectopic  pregnancy, miscarriage and  infertility amongst other symptoms.

How endometriosis affects fertility

Medics say endometriosis impairs fertility by causing distortion of anatomy of the pelvis, scarring, blockage of the fallopian tubes and hormonal imbalance.

“It distorts the anatomy of pelvis. It causes fibrosis (scarring).  It may cause tubal blockage and it is often associated with anovulation (absence of ovulation), and by so doing results to infertility,” said Dr Joseph Akinde,  a seasoned gynaecologist and Medical Director, Living-spring Hospital, Lagos while confirming that the condition leads to infertility in women.

According to the Endometriosis Institute, 30% to 50% of women with endometriosis suffer infertility. Even when they conceive, women who suffer endometriosis  are not able to carry the pregnancy to term as they may have miscarriage. Endometriosis.org, estimates that  10% of all women in their  reproductive years, about 176 million women, worldwide,  are affected by endometriosis.

In Nigeria, there are no local statistics on endometriosis as little is known about endometriosis among the Nigerian public but  Dr  Akinde, revealed that “We are seeing  more and more of it.”  He estimates that endometriosis occur in 25% of infertile women in the country.

No known cause

There are no known causes of endometriosis, but experts suggest such factors as retrograde menstruation, genetic factors, and immunology though some others disprove these claims.

“One of the possible causes is that during menstruation, menstrual tissue enters the fallopian tubes and the abdominal cavity, and implants. We generally believe that all women experience some type of back up at some point, but women who have immune problems go on to develop endometriosis, said Dr Abayomi Ajayi, a fertility expert and the MD, Nordica Fertility Centre, Ikoyi, Lagos.

On genetic factor link, Ajayi who once described endometriosis as the ‘least diagnosed’ disease in women’s health, said, “Another theory is that endometriosis is a genetic birth abnormality in which the endometrial cells develop outside of the uterus during fetal development. Once this female is grown and begins to experience menstruation, these misplaced cells become lesions or implants that cause pain and discomfort.”

He added, “There is also a genetic theory that is being studied worldwide by doctors which bases strong evidence on the idea that endometriosis is hereditary.  There is evidence that women with a family history of endometriosis are more likely to have daughters who suffer from the disease.”

Treatment/management of endometriosis

Treatment modalities for endometriosis are an issue of controversy due to the absence of a generally accepted model. There is no definite cure for endometriosis but there are treatment options to alleviate the pains or deal with the symptoms.  For most part, the pains are treated with pain-relievers. For Oshinowo, pain-killers were a constant companion because “when you live with endometriosis, you live with pain.”

Many experts are of the view that the best treatment for the disease is through hormonal therapy and surgery.. This is because symptoms of endometriosis are not specific and may present as other conditions such as fibroid, ovarian cyst, colon cancer and pelvic inflammatory disease (PID).

Generally, management options depend on the severity. In severe cases of endometriosis, Mayoclinic.org , an online medical resource website suggests that total hysterectomy-, surgery to remove the uterus and cervix as well as both ovaries may be the best treatment. But that is not an option for  women who still want to conceive.

Dr Akinde noted that while a severe case of endometriosis could only be controlled, a mild or moderate case could be treated via drug therapy (hormonal drugs) and surgery to remove the endometrial tissue “and the woman is able to get pregnant.”

But not all affected women are lucky to conceive after surgeries. Oshinowo who went through several surgeries, could not.  However, in some instances, some women who are infertile as a result of endometriosis can conceive through IVF,. Oshinowo had twins via surrogacy.

Dr Akinde who noted that pregnancy is ‘anti-endometriosis’ suggested that women with endometriosis should marry early and start raising children early.

“We know that one of the things endometriosis does is to mimic cycle. Pregnancy is anti-endometriosis. Perhaps once you attain maturity, you start making babies as soon as possible.”

He also advised against long child-spacing intervals. “The interval between pregnancies should not be too long because people who have had babies can develop it though it is not common . A minimum of two years between births is appropriate It is not advisable when you leave it to five or six years, that is too long.”

Sufferers of endometriosis are advised to seek the help of experienced gynaecologists or a reproductive endocrinologist to help make informed decisions about appropriate treatment plan.