Surviving Endometriosis

With about 50 per cent of women infertile globally due to endometriosis, gynaecologists in Nigeria posit that early detection among girls experiencing excruciating menstrual flow coupled with well-skilled and specially trained medical personnel can avert and save women in Nigeria and Africa. In this report, Rebecca Ejifoma chronicles the devastating experiences of three African women, who from age 14 have lived with the stigma, misdiagnoses and have undergone countless surgeries to ameliorate the pain

Just like research has it, gynaecologists have described Endometriosis as an incurable disorder in which tissue that normally lines the uterus grows outside the uterus. It is said to come with stabbing pain, menstrual irregularities and quite often, infertility, among women of reproductive age.

Dr Abayomi Ajayi, a co-founder of African Endometriosis Awareness and Support Group and Medical Director of Nordica Fertility Centre in Lagos, confirmed that Endometriosis affects 10 per cent of the global female population and major cause of infertility in over 50 per cent of women living with the condition. 

Among this large number of female warriors are Ms Kgomotso Mpho Gagosi from Botswana, Patricia Raymond and Aniefiok Jimmy both from Nigeria.

Kgomotso Mpho Gagosi

Mpho, as she is fondly called, was only 14 years old when she began to experience puberty – her menstrual cycle had just paid an August visit. Like every naive young adolescent in her shoes, it is a feeling of “maturity, here I come”. However, that fateful morning, young Mpho was dressed up for school when she felt an unusually sharp pain beyond an excruciating cramp. This call of nature changed her whole life’s trajectory even to this day. She was only 14 years old. 

Narrating her misery, Mpho recounted, “When I started my periods, the flow was so heavy and the pain was excruciating. I started getting these pains from the first day that I had my periods. I thought it was normal. I knew nothing about endometriosis. I was being given light painkillers like Paracetamol. The first time I went to the doctor, I was given Penicillin and a Sexually Transmitted Infection (STI) shot. By then I was not sexually active. That was where the misdiagnosis came from because the doctor told me I had an STI.”

According to the endometriosis warrior, although she was not sexually active at 14, the next time she went to the hospital, she was accused of abortion. “I was told I had undergone an abortion because I was bleeding heavily. At 14, I had never had sex, but I was being accused of having an STI just because I was bleeding heavily.

“At some point, a friend who removed an Ovarian Cyst advised me to go and do an HSG test. I did the test and the result showed that one of my fallopian tubes was blocked. The doctor assured me that the test would blow my tubes and increase the chances of me getting pregnant and that was how I conceived,” she expressed. 

From Botswana, Mpho travelled to South Africa to give birth through C-section. However, that didn’t halt the throbbing pains. “It persisted,” she chipped in. “Even after I returned home, I went back to South Africa and complained to the doctor that the pains were getting worse. Only then did the doctor open up that I was having endometriosis during the C-section but forgot to tell me because she was concentrating on delivering my baby,” she marvelled in disbelief. “Who does that? 

After that encounter, Mpho, the mother of one, felt her life split up. As part of the solution, she underwent six surgeries. With little or no moral support, she went down swinging. “The first time I was told that I had endometriosis, I did not expect I would survive for long.”

This singular discovery put her marriage in a vulnerable position. At this point, 28-year-old Mpho was married. “I felt like my dreams were shattered and I would never have kids,” she bemoaned, as she became teary. “But here I am today,” her words resonated in the hall as she heaved a deep sigh of relief. “I’ve got a 15-year-old child, and I believe with God I will have more children,” although now a single mum. 

And because she came, saw, and conquered, she urged the government in Africa “I wish our government will recognise endometriosis as a chronic condition, because that is what it is. It can cause infertility,” she insisted, bemoaning “Women with endometriosis go through depression and we need to get emotional support and get psychologists and talk to somebody who will make us see that there is life after endometriosis.”

Today, Mpho is the co-founder of the African Endometriosis Awareness and Support Group. She is also the Founder of Botswana Endometriosis, a passion borne out of her very unpleasant experience. “This is how I contribute my quota.”

Patricia Raymond

Like Mpho, Patricia Raymond – docile and frail looking in nature – is an endometriosis warrior. She told the audience at the International Conference on Endometriosis on the theme, “Endometriosis – An Unrecognised Burden in African Women” in Lagos that this singular disorder neutralised her limbs and vocal cords every time she was in her menstrual flow. 

“That I can stand here and talk to the world today is a miracle,” she chuckled gloomily while narrating that “A month ago, I could not stand. I was virtually half gone. I had thoracic surgery done. It was the first time that I could give this disorder a name. 

Reverberating the words of Mpho, Raymond conceded, “Endometriosis is scary”, adding, “If you are diagnosed, you are not just a survivor, you are a warrior”.

Having had her first experience at 14 incidentally, it was when she began to have cramping menstrual pains that radiated her whole system to her limbs. “The first question that I could ask my aunt who was my guardian, was how do I stop this thing – my menses,” says Raymond, who bottled up tears as she relayed her journey into endometriosis.

And at 14 while her peers visited the classrooms and field trips, young Raymond swung by the hospital to see the gynaecologist. “I ran there. I did not know what was wrong. The doctors kept telling me it was normal; it would stop as soon as I started giving birth.” And because the doctors could neither fathom her sorrow of adolescent hood or ordeal, she was only given pain medication and sent home to bear until eternity. 

“Whenever I had my period,” she chronicled, “I would force myself to school. But at home, no one would sleep. I would take seven days off work and stay home to nurse my sharp pains. I had just three weeks in a month because for one week I was out of action. I could not walk, talk or move. 

“I have had seven medical procedures from 2003 to date. The first time I had a procedure, an ovarian cyst was removed. I was told there was nothing else,” continuing that sadly with every surgery, the pain inflamed. 

Consequently, Raymond recalled how some acquaintances told her of being melodramatic. “They tell you you are overreacting, but you aren’t. At that age, if I knew what endometriosis was I would have been better informed to tackle it.”

As an endometriosis warrior, she lends her voice to other young girls and women in her shoes. “I want to encourage everyone suffering from endometriosis in Nigeria and Africa to be informed. Do whatever you can to minimise the pain and suffering of endometriosis medically and traditionally,” she interceded. 

Aniefiok Jimmy

For Aniefiok Jimmy, tall and elegantly looking, it was yet another misdiagnosis. “They said it was a fibroid,” she told the audience. “It all started like menstrual cramps. No one understood what I was going through. I went to the hospital and was checked. Nothing was found.”

Just like Mpho and Raymond, Jimmy made painkillers her only companion. “Each menstrual cycle,” she emphasised, “came with a different issue and I just kept managing it with pain relief drugs. But at a time the drugs were not working again. I kept looking for an answer for about four years, but there was no diagnosis.”

Owing to her unexplainable menstrual pain, many labelled her weird. “Whenever I was among other women I kept wondering why me. It was so bad that someone asked whether I had been used for rituals. At a point, I began to believe that it was possible; perhaps, I had indeed been used for rituals, because how could I be among many other women and be the only one crying and in pain during my periods?

She described her journey as traumatic, depressing, and torturing. “Whenever I was on my period, I could not do anything,” explaining that the cramps radiated from her stomach to her legs. “At one point, I had to resign from work because I could not go out; I would just stay home unable to do anything.”

In search of an answer, Jimmy dropped by different hospitals. She did over 20 scans all to no avail. Eventually, someone gave her a report. “One hospital said that I had a fibroid. Although they referred me for fibroid surgery, I was not convinced it was fibroid because the scans I had did not indicate fibroid.

“Four gynaecologists checked me and all said that they could not find anything. They said that my stomach was flat and that I did not have a fibroid. I told them of my symptoms and was instructed to repeat all the tests that I had done previously. At one point, I got fed up and stopped doing the tests,” she resolved. 

After scores of tests, Jimmy’s condition was diagnosed. “It was a transvaginal scan that finally detected that I had adenomyosis, which is still a form of endometriosis. At last, I knew what I was battling. It was only then that I had some hope.

Despite finally being well up on her health challenge, Jimmy had a brush with death. “I went to a chemist and was prescribed some hormonal drugs that almost killed me. I later found out that the prescription was against what I was suffering from.” This was until she learnt of Ajayi. “I am thankful to Dr Abayomi Ajayi for his counselling and support.”

Hence, she cautioned: “Doctors and health workers are also clueless about endometriosis and there is still a lot of ignorance. My advice to women is that if you find any strange development in your body, go to the right experts and get it investigated in time.”

Meanwhile, when THISDAY contacted Jimmy about three times for some clarifications, it was involuntarily abortive. Her only reason was she had another episode of agonising pain. Hence, she expressed regret, “So sorry, I’ve been down and my voice is bad”.

About Endometriosis 

Through the African Endometriosis Awareness and Support Foundation, a coalition of support groups with active members in Botswana, Lesotho, Zimbabwe, Kenya, South Africa, Ghana and Nigeria, Ajayi and others are creating awareness about endometriosis first among people living with the condition.

As a consultant obstetrician, Ajayi highlighted one of the major concerns about the condition – inaccurate diagnoses. “This is usually the result of a dearth of trained medical manpower as well as obsolete equipment in many medical facilities across the African continent.”

The fertility specialist raised the alarm that research shows that this condition affects women in their reproductive ages in the early years of secondary school when most girls see their monthly menstrual period for the first time. “For 60 per cent of women who have endometriosis, the symptom started before the age of 20,” he cited. 

Using HIFU for a Disease with No Cure

With over three decades in the medical profession, Ajayi said endometriosis has no cure. However, it can be managed. 

“To curb inaccurate diagnoses and better treatment outcomes in the management of endometriosis, African countries need Africa to implement effective policies for women who have the condition,” he enjoined. 

According to the doctor, “High-Intensity Focused Ultrasound (HIFU) is the non-invasive way of treating fibroids and adenomyosis. We are trying to look at the reproductive health outcomes for people who have had surgery for what they thought were fibroids.

“The advantages are that it is a non-invasive 

 a procedure that spares the uterus, and allows for normal vaginal delivery in future pregnancies. There is no general anaesthetic, a faster recovery period, and non-ionising radiation.”

Way Forward for the African Government 

While the difficulties of managing endometriosis, including incorrect diagnoses, still worry endometriosis warriors and gynaecologists in Africa, the endometriosis warriors and experts called on the governments across the continent to take a more active role in formulating policies that will significantly enhance the lives of women with endometriosis through improved management.

In the words of Ajayi, there is a dire need for medical personnel to be given extra training and extra skills for accurate and timely diagnosis to save more girls and women in Nigeria and Africa. 

“We also believe that we will be able to attract the attention of African governments to initiate policies and programmes that will greatly impact the lives of women with the condition, especially in accessing care. We are also calling on the media to join forces with us to raise awareness about the condition and give a voice to the voiceless,” Ajayi implored.

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Doctors and health workers are also clueless about endometriosis and there is still a lot of ignorance. My advice to women is that if you find any strange development in your body, go to the right experts and get it investigated in time