The picture above: If endometriosis was visible, this is how it might look! Photo Credit: Endometriosis Awareness Page on Facebook.
By Momodou Jarju
Story Summary:
· Endometriosis is a condition/disease that affects an estimated 1 in 10 women during their reproductive years (i.e. usually between the ages of 15 to 49), which is approximately 176 million women in the world and its causes and cure are unknown yet.
· Endo Warriors- sufferers of endometriosis- have symptoms such as painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, and infertility, and can impact on general physical, mental, social well-being.
· The Gambia’s data deficit has made it difficult for one to ascertain the number of women who may be sufferers of endometriosis. But based on the global estimate of 1 in 10 women being a sufferer of the condition, hundreds of thousands of Gambian women could be enduring the condition without them knowing.
When Penda Njie K. was diagnosed in 2014 that she has endometriosis, she couldn’t come to terms with the realities laid bare before her by a doctor. The 35-year-old married woman has been enduring pain since she was 14.
It took Penda 15 years before she knew what was bothering her all this while. She later learnt that it was a condition hardly talked about or known to many Gambians, especially women whom it affects.
“When I was diagnosed with endometriosis, I totally lost it and felt that I was not woman enough,” Penda recalls. “With the help of my family and my husband, I have regained faith.”
Telling her story to this medium six years on since she was diagnosed with the condition, Penda points out that endometriosis shouldn’t just be the business of women, but that of every member of one’s family. What’s worthy to note is that her story isn’t unique. And sufferers of the condition, like her, called themselves “Endo warriors.”
Fatou Jome, also known as Tuta, is a Gambian American who lives in Minnesota in the US. A qualified Medical Office Assistant with an additional degree in communications and public relations, Tuta is also an Endo Warrior.
Like Penda, Tuta has lived with the condition since her early teens while at high school. She would be diagnosed eight years later in her late twenties. The medical office assistant says endometriosis diagnostic is normally delayed because doctors make the sufferer believes that her symptoms are normal, which to her is a problem. This is because it causes more harm to the body as the endometriosis continues to grow.
While Penda says she was at a lost when she was diagnosed with the condition, Tuta believes that fear grips the mind of anyone informed of the condition for the first time.
“The first thing that would go through anyone’s mind, is dread,” she says. “But I was relieved that I got diagnosed.”
Tuta was young, married and had no idea what endometriosis was. Plus her doctor was not very knowledgeable about the condition. She says all her doctor told her was ‘you have a disease called endometriosis and is common among women, plus there is no cure.’
“He (the doctor) handed me a piece of paper with information about the disease. That was it. He never told me what to stay away from, what to do or how to manage the pain. I took it upon myself to research and study about the disease and that’s when I found out it can cause infertility and other problems,” Tuta explains.
At first I never thought about not being able to conceive, she adds, I was more concerned about how I was going to live with so much pain for the rest of my life.
“Then through my research, I found out it can be difficult to get pregnant. But I had a close-knit family, my parents, brothers and sisters especially who supported me during this period,” she says.
Endometriosis: Causes, Cure Unknown
According to endometriosis.org, endometriosis is a disease/condition in which tissue similar to the lining inside the uterus (called “the endometrium”), is found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue.
The online platform which indicated that the facts are produced by the World Endometriosis Society and the World Endometriosis Research Foundation, last updated in 27th May 2017, states that endometriosis is primarily found on the pelvic peritoneum, on the ovaries, in the recto-vaginal septum, on the bladder, and bowel. In very rare cases it has been found on the diaphragm and in the lungs.
The online facts also states that endometriosis affects an estimated 1 in 10 women during their reproductive years (i.e. usually between the ages of 15 to 49), which is approximately 176 million women in the world. It also shows that the symptoms of endometriosis includes painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, and infertility, and can impact on general physical, mental, social well-being.
What’s more mind-troubling is that the condition has no cure yet. The actual causes of endometriosis are unknown, but several theories have been hinted to be the causes of the condition/disease. However, there is hope as scientists are doing research to find a cure for it.
“The only option we have for treatment is management of pain by drinking anti-inflammatory drug, change in diet and some sort of sports,” Penda says.
Dr. Ali Saine, Specialist Obstetrician and Gynecologist (a surgeon who specialises in the female reproductive system), is a Gambian currently doing his Fellowship Programme in Obstetrics and Gynecology at the West African College of Surgeons, at 37 Military Hospital in Accra, Ghana.
Dr Saine says one of the theories was projected by John A. Sampson 1927, who said that endometriosis arise from the menstrual blood which flows backwards towards the tube to the abdomen.
However, Dr. Saine says, this theory has been refuted by some scientist because 90 per cent of women experienced this backward flow of blood from the womb through the tubes into the abdomen and this would have translated to a higher prevalence of the disease condition but that is not the case.
Another suggested theory is genetics, according to UK’s National Health Service (NHS- the UK’s biggest health website, with more than 50 million visits every month). NHS states that the genetic theory suggests that the condition tends to run in families, and affects people of certain ethnic groups more than others.
But none of these theories fully explain why endometriosis happens, HNS says, it’s likely the condition is caused by a combination of different factors.
The health expert says in developed countries, the prevalence of endometriosis is said to be around 10 per cent of women in the reproductive age (women at the age of 15-49 years). However, the prevalence is higher in women with chronic pelvic pain, inability to conceive or those with severe menstrual pains.
“The prevalence of the disease in Sub Saharan countries is not known because the diagnosis of the disease in such setting is not readily available or the expertise or skilled personnel to make the diagnosis are unavailable. However, there are some few studies conducted at institutional level, example in Nigeria which gave a prevalence of 4-8 per cent of the study population. The same problems to make a diagnosis can also be said to be happening in The Gambia,” he says.
Dr. Saine’s statement about The Gambia is true. The Gambia’s data deficit has made it difficult for one to ascertain the number of women who may be sufferers of endometriosis. But based on the global estimate of 1 in 10 women being a sufferer of the condition, hundreds of thousands of Gambian women could be enduring the disease without them knowing.
Society’s Stigmatization
Tuta says despite many people are oblivious about endometriosis, the stigmatization is plain to see saying people show sympathy, but fail to realize that sympathy itself is a sign of stigmatization.
The Endo Warrior puts it that society will always stigmatize sufferers of certain ailments especially those that have to do with reproductive health and physical abilities. Unlike others, she has a family and friends who understand what she is enduring and they are always there for her to support.
“We all know how being married and not being able to give birth to children brings big shame in our society. Some women are even considered witches who have eaten up their unborn children. Others are abandoned and left to live with the bad comments and side talks people make. I was once told to my face by my ex-brother-in-law that I was getting old and so needed to have a child. But I waived it aside as he was ignorant of the condition,” she says.
Penda on the other hand believes that it is difficult to make society understand endometriosis condition because it does not show that one is sick.
“In our case there can’t be empathy,” she says, adding that in The Gambia, dealing with endometriosis is difficult due to the culture of diet they have, and the lack of expertise in diagnoses.
The condition is not well known or reported in The Gambia too; something Penda believes is caused by the culture of silence (locally called ”sutura” in Wolof language).
“We urge everyone to advice females in their families that people, who experience symptoms like that of endometriosis, should go for checked up and the stigmatization should stop,” Penda says.
Fighting Endometriosis
In a bid to strengthen the fight against endometriosis, Tuta, who is also an entrepreneur in the beauty business, founded the Let’s Fight Endo Organisation. And she heads the organisation as the Chief Executive Officer (CEO). Tuta says the organisation, based in The Gambia and US, aims to enlighten Gambians, especially women about endometriosis- a condition that can affect their daily lives and is often misdiagnosed as painful period.
Living in America for most of her life and even with the best medical system there, Tuta had troubles being diagnosed properly. Thus, she wants women in The Gambia to live their lives knowing what causes their period pain and how to manage their lives effectively with it.
“I also want to educate my community, husbands to learn about it and know how to support their spouses who have these challenges and not make their mental health worse by abandoning young women to the labels of society. Mothers with young daughters will also know how to help their daughters in the early years before is too late,” she says.
Asked how has the responses been since the organisation was founded, Tuta responded in the affirmative. She says young men and women have willingly sacrificed their time and energy to work with the organisation as volunteers.
“We have also gained recognition from other parts of the world; we get emails and social media messages almost on weekly basis from people asking to join our movement or bring the organisation to their countries,” she says.
Mr. Sheriff Saihou Kanuteh, the Public Relations Officer (PRO) of the organisation, says they are registered in The Gambia and the United States, and currently seeking affiliations and partnerships with international bodies offering medical and aid services to women in Africa suffering from the condition.
“We presently have over twenty youth volunteers who are helping greatly to move the noble course,” Kanuteh says.
Also an entrepreneur and co-founder of Wakilo Innovations, Kanuteh says the non-profit organisation is dedicated to raising awareness about endometriosis and providing scientific, medical and educational support to Endo Warriors in The Gambia and Africa at large.
“Our vision is to bring an end to misinformation about endometriosis which brings about ostracisement and economic disadvantage of sufferers. Part of our plans of actions is to stage social interactions to create an atmosphere of trust which will enable women suffering from this disease most of whom are not diagnosed to understand what they were suffering and what to do after diagnosis,” he says.
Through the organisation’s social media advocacy, Kanuteh says a lot of individuals have pledged to volunteer to move their organisation to reach its goals.
“We’ve also managed to catch the attention of a couple of girls who after going through our advocacy activities thought they are also going through some similar symptoms which may be or lead to endometriosis. One of them is willing to undergo a surgery through laparoscopy which is the only diagnosis process to determine if she has endometriosis or not. Since the laparoscopy surgery is quite expensive and our organization is yet to be financially stable to sponsor the girl, we’re therefore urging interested institutions and individuals to kindly help raise funds for the said girl to do the surgery before it is too late,” he says.
Speaking further, Kanuteh says another reason the condition is not well-documented in The Gambia is because most girls and women aren’t willing to disclose their private health conditions with other people around them, especially when their condition has reached the critical level which may cause infertility. They would eventually develop the culture of silence.
At the organisation level, Kanuteh says they have two confirmed Endo Warriors- who are brave to break the culture of silence. They however have a girl whose case is yet to be confirmed.
He opines that the unavailability or few number of specialist gynecologists in The Gambia is another reason.
“As far as we can confirm, we are aware of only one gynecologist in The Gambia whom we believe is quite familiar with endometriosis and could carry out laparoscopy to diagnose it here. Yet, we have plans to confirm other specialist who may be present in the country too. We have plans to reach out to the various doctors especially gynecologists in order for them to give professional medical advices,” he says.
The Awareness Walk Campaign
The organisation has planned to stage a walk campaign in The Gambia to raise awareness about the condition on 20 March 2021. But the date has been brought closer to 6th March, 2021. This change is due to the government’s press release stating that by 8th March 2021, political events as well as social gatherings are barred from taking place. The Let’s fight Endo Campaign Walk will start from the Traffic Light Kairaba Avenue to the Youth Monument, Westfield at 8:30am.
The awareness campaign is also meant to serve as the official inauguration of the Let’s Fight Endo Organisation in The Gambia. They hope that the campaign will help in discovering more affected girls and women in our society, so that they can offer support to help them before it’s too late.
As part of efforts to ensure the success of the forthcoming campaign, Tuta’s fashion show in America has recently donated some proceeds from the sales of their dresses to the organisation. Gambians at home and in the diaspora also have continuously donated vitamins, pain killers and used their social media platforms to inform their followers about the work they do.
“We have also created an awareness video featuring some of Gambia’s finest actors to communicate the message of how to manage women suffering from the disease. The feedbacks have been amazing and most people want to know more about endometriosis.
“We are also communicating to people in their local dialects to ensure our message is not limited to urban Gambia. This has been achieved through the help of our media partners in radio and television,” she says.
Nonetheless, Tuta says they are working hard to ensure the diagnosis and treatment of the condition in Gambia is made more available and affordable. But they cannot achieve this all alone. A help from the government through the ministry of health, she says is needed.
“Donation is not necessarily only cash. Your time, your social media platforms or your influence also helps us achieve our set goals. Endometriosis is real and has nothing to do with a woman’s past reproductive health history. Let’s be there for the women, let’s fight for women’s health and show them that they are not alone. They need your help and need your emotional and physical support,” she says.
Video: An awareness campaign video acted by some of Gambia’s finest actors, including award-winning actress Monica Davies.
The Pain Is Real
Tuta advises young girls and/women to talk to a doctor when they start experiencing heavy bleeding, pelvic pain, fatigue, constipation, bloating, a very bad painful period, back and leg pain and cramping that begin before and extend several days into their menstrual period. She also urges young men married to sufferers of endometriosis to be there for their spouses.
“When they nag or scream at you in frustration please treat them kindly. Do not abandon your wives because of endometriosis, instead give them emotional support and love them unconditionally because the disease alone can cause stress and depression,” she says.
Kanuteh advises affected girls and/women to be courageous by speaking out to their close families and health workers about their reproductive health issues in order to avoid any future damages.
“Also, our private and public health sectors should try to also make public sensitization programs about this silent tormentor, endometriosis,” he says.
Dr. Saine adds: “Endometriosis is real, and if there is any woman who is going through very severe menstrual pain which sometimes is affecting their daily livelihood should report their symptoms to the hospital. Fortunately, we have a laparoscopic set at the Edward Francis Small Teaching Hospital where a diagnosis of the condition can be made.”