Endometriosis : Spotlighting an Invisible Sickness

Endometriosis, a relatively unknown disease that causes pain, infertility and intense bleeding among women is increasingly affecting many Nigerian women, while doctors often mistake it for normal menstrual issue, but the Endometriosis Support Group of Nigeria is making efforts at spotlighting this invisible but terrible illness. Mary Ekah writes

We simply call it menstrual cramps and so we treat it with kid gloves or just endure it for the period the menstrual flow lasts while being oblivious of the fact that this could plainly be a symptom of Endometriosis, a serious ailment which could as a matter of fact lead to complications in ones life, among which is infertility.

Painful menstrual periods, we usually think are normal but they are not. And yet a lot of young girls and grown up women suffer from this dreadful condition silently for many years or even the rest of their lives. Usually, the long delay in detecting the disease early enough makes things worse with much negative impact of the lifestyle of sufferers.

Endometriosis is described as a disease in which tissue that normally grows inside the uterus (endometrium) grows outside it. Most often, it occurs on the ovaries, fallopian tubes, and tissues around the uterus and ovaries; however, in rare cases it may also occur in other parts of the body like the brain, chest, abdomen and so on.

The most common symptom of endometriosis is pain that occurs prior to, during, or after menstruation.

No severe pain can be compared to the pain of endometriosis in its worst stage. Those who have gone through this woeful experience have attested to the fact that the physical pains one feels when suffering from Endometriosis is more severe than that which you feel from a smashed ankle or broken bone. That is how bad it is. And yet this disease is hardly identified even by medical professionals.

It is on this note that Endometriosis Support Group of Nigeria (ESGN), a non governmental organisation, that has been creating awareness on Endometriosis in Nigeria for over a decade now, is intensifying its efforts to creating more knowledge and consciousness about the disease.

Speaking during a press briefing in Lagos to announce the 2017 Endometriosis Awareness Campaign, the Managing Director, Nordica Fertility and Founder ESGN, Dr. Abayomi Ajayi, said the disease occurs in one in every 10 Nigerian.

Explaining in simple terms what Endometriosis is all about, Ajayi said, “The body is made in such a way that a woman’s monthly menstrual flow comes out through the inner lining of the uterus and then goes through the cervix to the vagina and then flows out. But for some people and for whatever reasons we are not too sure about, they have endometrium or that inner lining of the uterus present in some other places apart from just the lining of the Uterus.
“What happens is that every month that they bleed, those endometrial implants on other places also bleed. So let’s imagine that a woman has this lining on her abdomen, it means that every month she bleeds in her abdomen and because abdomen does not usually have blood inside, all the organs in the abdomen will start reacting to the unusual present of the blood in the abdomen.”

He noted further that after a while, cysts tissues start to form in abdomen, which then results in all kinds of symptoms. These result in pain in the abdomen and most of the times, the doctor examine her but would not find any reason why the pain is there and all the doctor could do at such situation was just give her some pain relief tablets or worst still tell her that there is nothing wrong with her but it is in her head. This is the life that many patients with Endometriosis live with.

Ajayi explained that the symptoms could be so misleading that a lot of people were misled to believe it was something else they were suffering from, depending on where these deposits are.

“In fact some people have deposit in the chest and therefore can be bringing out blood from their throats and that could be mistakenly interpreted to be tuberculosis. There are also few women that the deposit is in their brains and so they bleed into their brains, which most often results in epilepsy and so you see these woman convulse and all that. The symptoms are so wide spread and that is why it is called masquerade of diseases. Sometimes it is very difficult for doctors who are not specialised on Endometriosis to recognise them,” Ajayi added.

He said that in Nigeria, many women until about a few years ago, die with endometriosis while only a few of them were fortunate enough to go abroad where the doctors were able to diagnose endometriosis by which time it would have been almost too late to do anything as they would have already suffered a lot of consequences as result of the disease.

Frowning at the very long period of lack of detection of the disease amongst the medical field in Nigeria, Ajayi recalled how he first discovered Endometriosis in Nigeria. “In 1990, when I was working at a University Teaching Hospital, a patient was brought and they thought the woman had cancer in her chest and they had opened up her chest only for them to find out that it was Endometriosis and not cancer. So they then referred her to a gynecologist and that was my first time of seeing Endometriosis.

“And because we were told that this disorder is not common in blacks, so until about 30 years ago, no doctor was focusing on endometriosis in this part of the world. Buy not up to two week after, another patient came over, this time; she was bleeding from the naval. And they have taken her to churches and other places for cure thinking it was a spiritual attack. For them, they were like, how can someone be bleeding from the naval? When she was brought we found out that it was endometriosis. That also raised my curiosity and I then knew there was endometriosis in this part of the world and it made me to go home and strive to do a study on it,” the fertility expert noted.

Speaking further on the continuous failure to diagnose the condition early enough as well as the lack of awareness in the medical profession in Nigeria, he said, “I reviewed over 200 patients. I found that it was present in only three of them. So I concluded also that it was not a common thing but little did I know that we were missing a lot of things and that was in about 1993.

“Then we started Nordica Fertility and then the husband of the person that her chest was cut at the Teaching Hospital, one way or the other found his way to Nordica. I didn’t know how because I was just one of the doctors that took care of the wife. So we started talking, and he told me that the wife had since left for the UK for treatment but he wanted her to come back home and he was looking for a doctor that would look after the wife. That was my first treatment of Endometriosis in Nigeria and this led us into doing laparoscopy surgery during which we started discovering a lot of women with endometriosis in Nigeria.”

He said that since then, ESGN has been trying to see how to let doctors know that this condition is here with us and the awareness has been on for last 12 years, adding however that, ”Yet it is not yet where it should be.

“We find that a lot of people still misunderstand people who suffer from Endometriosis, thinking they are possessed or suffering from demonic attack. And so we thought that it is something that we should let people understand so that if your sister or wife has Endometriosis, you would know what she is going through,” the Endometriosis expert added.

Ajayi has also discovered that many women in this environment rarely report to the doctor when they have symptoms of Endometriosis. Sometimes they take it as part of life because they feel that it is simply menstrual pain and so they just bear the pains till the flow is over. While at other times, some women have symptoms that they don’t like discussing like menstrual pains, sexual pains, pelvic pain and so on. He noted however that what gives them away most time is when it affects fertility. “That is when they start running helter–skelter to doctors and that is when it is realised that there is a possibility of Endometriosis.

Ajayi said further that ESGN born in 2005, has the sole aim of assisting women with Endometriosis, adding, “We try to be at the forefront, actively lobbying for better outcomes, education and awareness, care, treatment and support for women affected by Endometriosis. So every year, we wear yellow so that our wives, sisters and daughters won’t have to suffer in silence. The journey is quite long and we are glad that the consciousness is increasing and people are so happy to know that some people are working on endometriosis in this part of the world. And because there is no data in this part of the world on Endometriosis, we have published some of our findings in reputable journals to enlighten more people.”

He said further that it was disheartening that most women only present their cases to doctors when they have fertility problems. “The diagnoses are made most of the time in the fourth decades of life like when the women are like between 31 and 40 and by that time, endometriosis is at its worse stage, especially regarding fertility. And that is why this year, we are talking on the theme, ‘Endometriosis in Adolescent’ because we know that is when it starts. “When a girl child start menstruating what are the signs that she needs to visit the doctor? What are the things that should make a girl say, I think something is wrong with me? And she should be able to express that without being afraid of anybody. You know 15 years back what people would say when a girl complains of severe pains in the abdomen is that she probably must have aborted a pregnancy,” he added.

To this end, he believes there was an urgent need for awareness to be created amongst teenagers to enable them understand early in their lives what Endometriosis was all about and also to be able recognise early enough when they are suffering from it. As early detection, according to Ajayi, might help save a whole lot of complications later in life.

Consequently, Nordica Fertility is taking the awareness drive to schools this time, this is in commemoration of the Endometriosis World Wide March 2017. It will also serve as part of Nordica’s 2017 Endometriosis Awareness Campaign, tagged, ‘Endometriosis in Adolescent’.

The campaign, he said was very important in that Endometriosis can begin in teens as early as the first menstrual period, adding, that it is important to consult a physician if a teenager has menstrual pain that is severe enough to interfere with normal activities.

“So this year we are starting with a march in Abuja on March 2 and then on March 11 in Lagos, we are also going to march for our women where we would involve both public and private sectors. We are involving secondary schools in a way that we are organising an essay competition on Endometriosis amongst secondary school students and the prizes for the winners will be presented at the Endometriosis Gala, which is slated for March 19 at the Civic Centre, Victoria Island Lagos.

“We are also having a physician roundtable where we would bring medical experts from all over the world to come and discuss Endometriosis because there are countries where they are better than others because of their earlier exposure to endometriosis,” Ajayi noted.

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