‘Secret Plague’ Endometriosis: So painful, you will be scared of pregnancy

By Chioma Obinna

“My heart was broken when my doctor told me I had less than one percent chance of conception.   But, today, I am  rejoicing because I was able to overcome the scary stage three  endometriosis, a disorder in which the tissue that forms the lining of the uterus grows outside of the uterine cavity.   Gabriel and Joy are proofs  of my victory over the terrible condition, “Ebere Amadi narrated.


Two years ago, Ebere was diagnosed with stage  two  endometriosis. A few months after the diagnosis, she grew a cyst on her right ovary.   Unfortunately, her doctor could not recognise it was endometriosis and  told her it would go away.   But the problem persisted.   Ebere continued to experience excruciating pains.

Few months later, the cyst ruptured into her ovary which swelled and started to bleed into her abdomen. Her belly grew until it looked as if she was six months pregnant. At a point, she could not walk.

One night she woke up in unbearable pain. Alarmed, her husband, Ike, rushed her to  one hospital but, after several hours and she did not  act better, she  was referred to another hospital where an ultrasound revealed she had bled internally. An emergency operation had to be performed to save her life. She lost the ovary.

Devastated, Ebere began to see her dreams of becoming a mother going up in smoke.     She constantly worried if she would ever get pregnant again.   Year’s later, she tried to get pregnant, and went from one specialist to another without success. After several consultations, she resumed treatment at one fertility centre in Lagos, where, after medical evaluation, her hope of becoming a mother was rekindled, even with one ovary.

Like Ebere, a former Nigerian beauty queen, Ms Nike Oshinowo, had always told her story to whosoever cares to listen. Nike, who lived with endometriosis since the age of 13, never knew she was going to survive the pains associated with the disease.   New, then in boarding school in  far away England, she  experienced pains associated with endometriosis  when she began her periods and was hospitalized for 10 days.

According to her, the first time she experienced the pain of endometriosis was very traumatic.

“I thought I was going to die, the first two days but I learned to just cope with it. Until I turned 40, Nigerians didn’t know I suffered from endometriosis .When I turned 40, I granted an interview and Nigerians understood why I never drank alcohol. You cannot be on medication and take alcohol”, the former beauty queen narrated.

“It is extraordinary the effect that endometriosis has on your life especially if you are ignorant. Ignorance is of two types – knowingly or unknowingly. My mother unknowingly was ignorant because nobody had educated her about endometriosis.”

Due to the ignorance associated with the disease even among medical experts, Nike’s case was left so late in life in spite of the fact that she grew up in England. It was frightening.

“I wish I had someone to blame, I wish I could blame the doctors. I have had so many surgeries I have lost count,” she said.

However, one  challenge common to Ebere, Nike and the estimated 176 million women around the world who suffer from the ‘secret plague’ is getting pregnant.

“How do I get pregnant to get to that stage? It was wonderful meeting Dr. Abayomi Ajayi of Nordica Fertility Centre, Lagos, who is so passionate and knows so much about the disease,”Nike stated.

For Ebere and her husband Ike, they were encouraged to undergo treatment.   Determined to have their own offspring, they took a step forward.   Their doctor presented her with treatment options for women with infertility due to endometriosis such as ovarian stimulation with  intrauterine insemination (IUI) and In vitro fertilization (IVF).

“As part of the counselling process, we were told that regardless of age or the severity of my disease, women with infertility due to endometriosis are at least five times more likely to have a baby per treatment cycle of IVF than with IUI Ebere explained.

“But we were made to understand that although many doctors still recommend IUI preferentially to women with endometriosis, it is in part self-serving, given the fact that most doctors do not have IVF programmes.   We were told that IVF was far more successful than IUI in the treatment of endometriosis-related infertility.”

However, due to the cost involved, Ebere and her husband decided to try IUI.   The first round was not favourable, but they were not deterred.   At this point, the couple decided to save up for an IVF treatment which eventually yielded positive results. They are proud parents of two lovely children (a son and a daughter).

Ebere said: “My doctor explained that the IUI failed due to the toxins from endometriosis released into my pelvic secretions that coat the surface of the membrane that envelops all abdominal and pelvic organs, including the uterus, tubes and ovaries.

“And the fact that my eggs must pass from the ovaries, through these toxic secretions, to reach the sperm lying in wait in the outer part of the fallopian tubes, and, in the process, the eggs become exposed to the toxins.

“Unlike in IVF, the eggs from the ovaries prior to ovulation are fertilized outside the body and then the resulting embryo(s) transferred to the uterus and this process bypasses the toxic pelvic environment.”

What it is

Endometriosis is a condition suffered by women, yet much is not known about it. Experts describe it as a condition where the lining of the uterus grows outside the uterus. After a time, these deposits bleed and, when the blood absorbs it, leaves a visible pigment that can be identified upon surgical exposure of the pelvis. Such endometriosis deposits invariably produce and release toxins that coat the surface of the membrane that envelops all abdominal and pelvic organs, including the uterus, tubes and ovaries.

According to a fertility expert, Dr. Rachana Garde, of Shady Grove Fertility’s Woodbridge, and Annandale, VA, offices, the tissue responds to your menstrual cycle hormones by swelling, thickening, and then shedding to mark the beginning of the next cycle. While the bloodshed from the uterus is discharged through the vagina during your period, the bloodshed from endometrial tissue that grows in the pelvis remains and can become scar tissue. This scar tissue can grow to block the fallopian tubes and interfere with ovulation. Additionally, endometrial tissue that spreads to and grows inside the ovaries may form a type of ovarian cyst called an endometrioma, which can potentially affect fertility.

According to Rachana V. Garde, endometriosis is not always easy to diagnose and, as  a result of its genetic nature, it  is common among sisters and even cousins.   Most women, who have it, do not have symptoms. Of those who do experience symptoms, the commonest sign is pelvic pain and infertility. Some of the most frequently reported symptoms of endometriosis include  severe menstrual cramps, chronic abdominal pain, pain with intercourse and excessive bleeding.

Garde said it can be one of the reasons for infertility in otherwise healthy couples. His words: “Endometriosis  is often misdiagnosed leading to delays in treatment, sometimes for several years. The surest way to diagnose endometriosis is by laparoscopy, an operation performed under general anaesthetic, where a small instrument called a laparoscope (a tubelike telescope with light in it) is inserted into the abdomen through a cut in the belly button”.

Most people are diagnosed between the ages of 25 and 35 years, and it has been reported in girls as young as 11 but rare in post-menopausal women.    It runs in families and delaying pregnancy until an older age is also believed to increase the risk of developing endometriosis.

Studies have found that surgery, especially on or around the ovaries, can damage the ovarian tissue, which can result in a decrease in ovarian reserve (egg supply). This decrease can ultimately make conception more difficult in the future.    Endometriosis, mainly found in women of reproductive age, is said to shrink at menopause.

The burden

Endometriosis, described as “work in progress” by medical experts, has been suspected in girls or women who constantly cry in pain while menstruating or about to menstruate and who have been given some form of treatment, but no respite.

Unfortunately, there is no clear data about the prevalence in Nigeria.

Sadly, many women have become their own pain manager for years, due to the gap between medical experts and scientific understanding of the disorder.   As such, thousands of Nigerian women in their reproductive age may have been rendered childless due to the disorder.

Dr. Abayomi Ajayi  said 15-20 per cent of couples with problem of infertility have endometriosis, and, as a contributor to the problem of unexplained infertility and chronic pelvic pain, endometriosis is often misunderstood and misdiagnosed, yet it is treatable and preventable, but the pain it causes is worse than a toothache.

“About eight percent of women in assisted reproductive technology (ART) programmes have the primary diagnosis of endometriosis and it constitutes the third commonest findings, 15.7 percent at laparoscopy. The data is from review of laparoscopic procedures at Nordica Fertility Centre.”


Why it occurs

Unfortunately, the exact cause of endometriosis is unknown. But other possible causes, according to experts, may be due to retrograde menstruation; metaplasia, i.e., cells of the abdomen change to endometrial cells; surgical transplantation; surgical scar endometriosis, such as Caesarean Section, episiotomy or even surgeon’s gloves.

When a woman with the disease has her monthly period, the blood and tissue shed from the endometrial growth has no way of leaving the body, resulting in internal bleeding, inflammation that may result in pain, adhesions and bowel problems.   Endometriosis also causes damage and blockage to the fallopian tube by impeding the journey of the eggs down the tube to the uterus, leading to infertility.

It was also gathered that the predisposing factors are age (25 to 35 years); heredity, or genetic predisposition (if there is a mother or sister with endometriosis in the family); starting menses early, i.e., less than 12 years; frequent periods less than 28 days or longer, lasting menstrual flows of more than seven days; never had children; slim women and a closed hymen.

Ajayi said endometriomas (ovarian cysts) also interfere with ovulation and quality of egg; toxins/chemicals are also released by the endometriotic deposits which are toxic to the eggs and embryos, the toxins also affect the lining of the womb and disturb implantation.

Treatment options

According to experts, while endometriosis may make it harder to conceive on your own, your chances of becoming pregnant can be high depending on the severity of the condition, your age, overall health, and the treatment option you choose.

But the good news remains that women who suffer from the incurable disease could still experience the joy that comes from giving birth to a child through IVF.

Best scenario

In terms of medical management, IVF is recognized to be most appropriate procedure because it prevents the eggs from being exposed to the toxins released by endometriosis.

Since IVF is carried out through  removal of eggs from the ovaries prior to ovulation, fertilizing them outside of the body and then transferring the resulting embryo(s) to the uterus, it bypasses    the toxic pelvic environment.

However, health watchers have expressed worry that patients of endometriosis are often misunderstood. The condition poses danger that, if not tackled, the woman could live a life of misery, hence the need for more awareness about the availability of treatment options in the country.

They also suggested that women with the symptoms associated with endometriosis speak with a fertility specialist prior to initiating any exploratory surgery, in order to determine options and appropriate next steps that will not compromise fertility potentials since some surgical procedure could put them at risk.


‘Secret Plague’ Endometriosis: So painful, you will be scared of pregnancy on Vanguard News.


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