OPINION

Endometriosis: Unraveling the gap between medical experts and scientific understanding

By Odimegwu Onwumere

"Endometriosis poses a danger in making the women’s world to go on extinction if the menace is not arrested soon.” The good-looking, brilliant and soft-voice wife of the Vice President, Mrs. Dolapo Osinbajo said this in her keynote address as a Special Guest of Honour at the luncheon of Nordica Media Merit Awards 2016, held at the Endo Gala Night & Fund Raising Dinner, on Saturday April 9th.

All over the world, an approximation of 89 million women has endometriosis, according to the Endometriosis Association, a research and advocacy group. Forlornly, many women have become their own pain manager for years, due to the gap between medical experts and scientific understanding.

“Why is the gap so huge between scientific understanding of the disease and the treatment people are getting? There’s a lack of understanding in the medical community of what options are available and what symptoms to look for,” said Dr. Grace Janik, a reproductive surgeon in Milwaukee.

Women are structured in the same mechanism, but specialists have said that 6 to 10% of the general female population is inflicted with the wreck. Some gyneacologists are said not to be comfortable carrying out surgery on 12, 13- and 14-year-olds. In Nigeria and some countries, there is even the dearth of pediatric gyneacologists.

“The medical teaching on endometriosis was that it’s a disease of women in their reproductive years, not adolescents. Many times, we hear that girls are told they’re too young to have the disease, they’re trying to get out of school, or that they’re exaggerating.

“Add the misconception that pain with menstruation is normal, and you get a bundle of confusion. And not the least, most gyneacologists are uncomfortable treating adolescent gynecological problems, and pediatricians don’t,” said Mary Lou Ballweg, the president and executive director of the Endometriosis Association.

Early to mid 1980s, British, and Australian endometriosis groups were set up. It was notable that members of the public had bowel symptoms as at the time, but it took the efforts of few connoisseurs to notice that bowel symptoms were a widespread symptom of endometriosis.

“It was only when the national endometriosis groups began talking to leading gynaecologists about the experiences of their members that doctors began to look for and find bowel symptoms in their patients.

“Sometimes the gynaecologist will refer the woman to a bowel specialist if he or she is not sure whether the bowel symptoms are due to endometriosis or another cause,” said a global forum for news and information, endometriosis.org.

Many women who have had “pelvic floor disorder” were approved pelvic muscle exercises for days, most times, “three times a day”. When some teenagers have some gynecological disorder, they do not want to complain; they deal with it in order not to be disdained by their wards and due to, the ignorance of understanding endometriosis.

The irony is that in a country like the USA with her hi-tech, among a rough estimation of 6 million women suffering from endometriosis, most women with the disease were said, started having the symptoms before the age of 20, without their doctors or them knowing what the disease was.

What endometriosis does

Many women across the world have been in menopause at 20. During their menstrual period, they weep. And if that was not working, they groan. Some even yell “Jesus…” and if that was not working, they call “Jehovah…”

Some rush to spiritual homes and others take to pain relief. Sexual intercourse is even a nightmare. They have a sensation in their abdomen as if they have butterfly flying in their stomach. Most times, some pass out from the cramps.

They feel nauseated, constipated and exhausted. To the wealthy among them, each sees over 30 doctors per annum. When they could not find what was wrong with them, the pains are ascribed as a part of being a woman.

But those in Nigeria who have visited the Nordica Fertility Centres and have Dr. Ajayi performed a laparoscopy to see what was going on, at last, understand that they have endometriosis. 

Ms. Fuersich, a co-founder of a support group, Endo Warriors, once told her doctor, “I feel O.K. It was very discouraging that I had to be in pain for so many years before I got any real help.”

Not sleeping on their oars

Ex-Beauty Queen Nike Oshinowo whose authentication at the Nordica Media Merit Awards 2016, of how endometriosis has been an unfriendly friend, brought tears down her jaws.

While testifying on the podium about the presence of endometriosis, she asked for the reason doctors and scientists keep on telling the world what endometriosis is and are yet to find a cure.

Despite the fact that there is no cure for endometriosis yet, many medical experts are not sleeping on their oars and watch women gnash their teeth in pains as a result of the disease.

The Nordica Fertility Centres in Lagos, Asaba, Ibadan, are carrying journalists along in the sensitization of the disease. Many Nigerians at home that have heard about the disease know what it means through the fervent task that Dr. Ajayi has been taking to liberate the women’s world in Nigeria from the scourge.

Uncountable numbers of children have been delivered of women at the Nordica Centres; women who once had challenges of fertility. Over 300 cases of endometriosis have been diagnosed and being treated at the Nordica Centres. Here and there is the Nordica Fertility Centres holding sensitization march.

Apart from fibroid which is a known factor that causes infertility in women, Dr. Ajayi has exposed the ugly handiwork of endometriosis as among the key causes of pain during sexual intercourse and infertility in women.

Misconception of endometriosis

All over the world, therapeutic measures that relief of clinical symptoms is yet far from being curative; and medical experts like Dr Ajayi are working round the clock in making sure that the plague is managed.

Ex-Beauty Queen Oshinowo lamented that endometriosis is reducing the feature of life of women since evidence is yet to be shown that medical-surgical conduct drastically boosts fertility among the affected without the application of therapies.

Many women had ascribed endometriosis with ethnic coloration, not taking to the fact that it is the “presence of endometrial-like tissue (glands and stroma) outside the uterus”.

“A lot of women who are looking for relief from endo will undergo a hysterectomy, and that won’t necessarily provide a relief from their symptoms,” said Dr. Linda M. Nicoll, an assistant professor in obstetrics and gynaecology at NYU Langone Medical Center.

In most cases, about 25 to 50% of unproductive women have endometriosis without them knowing.

Endometriosis in Nigeria

Whereas Nigeria is just coming to terms with the reality of endometriosis through the efforts of Dr. Ajayi in the area of sensitization and taking medical care, countries in Europe and America had over two decades been making donations towards the fight against the disease.

There was an announcement by the Public Health Executive Agency of the European Union on May 10th, 2007, that a €296,000 grant was bestowed to a European league of universities and patient support organizations in creating wakefulness about endometriosis in Europe. A source added, “In financial terms, one analysis estimated that endometriosis cost the U.S. $22 billion in 2002, including hospitalizations, loss of work, surgery, and medications.”

From Australia to America, from UK to UAE, groups and individuals are forming alliances in supporting the fight against endometriosis, but Nigeria and her government are behaving like they have the symptoms of endometriosis which include “nausea, lethargy, chronic fatigue” in realizing the efforts of Dr. Ajayi.

Researchers viewpoints

“In a study of 229 women undergoing surgery for endometriosis, French researchers found that those with the most extensive form – known as deep infiltrating endometriosis (DIE) – were more likely to have had particularly painful periods as teenagers,” reported Reuters, a news outfit.

Dr. Ajayi had informed about the three forms of endometriosis in the company of superficial endometriosis, ovarian endometriomas and DIE. He said that the latter is largely widespread. In making sure that the endometriosis sensitization reaches the nooks and crannies of Nigeria, Dr. Abayomi Ajayi, the Managing Director of Nordica Fertility Centre, Nigeria and his team, hosted the ‘Nordica Media Merit Awards 2016’.

The awards which were meant for the news items published or broadcasted the previous year had many entries from journalists across the country. At the Endo Gala Night & Fund Raising Dinner, held on Saturday April 9th 2016, three journalists in the categories of the Print, TV and Digital smiled home with the some of N250, 000, each.

The award-winning journalists had been remunerated with the prize money for their efforts in contributing to women’s fertility sensitization, hence making the ‘Nordica Media Merit Awards 2016’ a reality that journalists should gear up in preparation for the next contest.

This is because news outfits like Reuter, said, “Women with DIE usually have adhesions in multiple areas of the pelvis, including the vagina, bladder, bowel and the ligaments attaching the uterus to the pelvis.”

A source that would only want anonymous said, “Experts don’t know if women are born with these cells in the wrong location, whether the cells actually migrate or if the condition is caused by some disorder of the immune system.”

A specialist, Ellen T. Johnson advised in *When others don’t understand*, a superlative treatise, saying, "In general, people view illness as a self-limiting event. A person gets sick, they get treatment, they get better. They mistakenly believe that if they don’t get better, it must mean they have a fatal disease.

“Most people don’t know there’s something between a minor annoyance and a life-threatening illness. They aren’t aware of chronic pain, persistent disease processes, or invisible illnesses.

“It’s difficult for most people to comprehend because it’s outside their realm of knowledge and experience. But there are ways to help our friends and family understand what we routinely go through as we repeatedly deal with endometriosis."

Odimegwu Onwumere is a Rivers State-based poet, writer and consultant and winner, in the digital category, Nordica Media Merit Awards 2016.