lWe were struck by condition that has no cure, but manageable medically

By Sola Ogundipe

Three women stood out during the 2nd international conference of the African Endometriosis Awareness and Support Foundation, that held in Lagos recently.

The women – Kgomotso Mpho Gagosi, Annie Jimmy, and Patricia Raymond, are survivors of endometriosis – an incurable disorder that manifests with pain, menstrual irregularities and quite often, infertility, among women of reproductive age.

Mpho, Annie and Patricia have battled endometriosis and triumphed. They are Endometriosis Champions.

At the conference, themed: “Endometriosis – An Unrecognised Burden in African Women”, the three Endo Champions narrated from the patient’s perspective, their encounters with endometriosis, a disease that affects 10 percent of the global female population. Excerpts:

Diagnosed at 14, I was told I had STI — Kgomotso Mpho Gagosi, Co-founder, African Endometriosis Awareness and Support Foundation

We need to accept that endometriosis is a condition with no cure, but when you get a doctor who tells you that you have got it and that you will never have kids, definitely you will be depressed.

The first time I was told that I had endometriosis, I did not expect I would survive for long. I was married by then and I felt like my dreams were shattered and I would never have kids. But here I am today. I’ve got a 15-year-old child, and I believe with God I would have more children.

When I started my periods, the flow was so heavy and the pain was excruciating. The first time I went to the doctor, I was given an Sexually Transmitted Infection, STI, shot. By then I was not sexually active, Thats where the misdiagnosis came from.

The doctor told me I had an STI. I was a 14-year-old who had not had sex and was being given penicillin for an STI. The next time I went to the hospital, 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.

I started getting these pains from the first day that I had my periods. I thought it was normal, I knew nothing about endometrioisis. I was being given light pain killers like paracetamol until at some point a friend who removed an ovary 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.

I’m from Botswana, but I went to South Africa to give birth through a C-section. However, the pains continued even after I returned home, so I went back to South Africa and complained to the doctor that the pains were getting worse. Only then did the doctor say to me that she discovered that I was having endometriosis during the C-section but forgot to tell me because she was concentrating on delivering my baby. Who does that? However, that’s how I knew that I had endometriosis and right now, I have had six surgeries.

I wish our governments will recognise endometriosis as a chronic condition, because that is what it is. It can cause infertility. 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.

They said it was fibroid — Annie Jimmy
It all started like menstrual cramps. No one really understood what I was going through. I went to the hospital and was checked, but nothing was found. Each menstrual cycle came with a different issue and I just kept managing 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.

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 actually 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 pains during my periods?

It was traumatic, I really suffered. Whenever I was on my period I could not do anything, the pains radiated from my stomach to my legs. At a point I had to resign from work because I could not go out, I would just stay home unable to do anything.

I went to different hospitals, and did more than 20 scans all to no avail. Eventually one hospital said that I had fibroid and referred for fibroid surgery. I was not convinced it was fibroid because the scans I had did not indicate fibroid.

Anyway I went to the indicated hospital and was told to lie down, I was checked but nothing was found. Four gynecologists checked me and all said that they could not find anything. They said that my stomach was flat and that I did not have fibroid. I told them of my symptoms, and was instructed to repeat all the tests that I had done previously. At a point, I got fed up and stopped doing the tests.

Such was how I carried on until the problem was diagnosed. I did so many tests but it was a transvaginal scan that finally detected that I had adenomyosis, which is still a form of endometriosis. At last knew what I was battling. It was only then that I had some hope.

I am thankful to Dr Abayomi Ajayi for his counselling and support. 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.

Doctors and healthworkers 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.

I could not walk, talk or move — Patricia Raymond
That I can stand here and talk to the world is a miracle. A month ago, I could not stand. I was virtually half gone. I had a thoracic surgery done and it was the first time that I could give this disorder a name. Endometriosis is scary. If you are diagnosed, you are not just a survivor, you are a warrior.

I was just 14 when I began having bad menstrual pains and the first question that I could ask my aunt who was my guardian, was how do I stop this thing? I meant my menses. At 14, I started visiting the gynecology clinic. I ran there, I did not know what was wrong. They kept telling me it was normal and would stop as soon as I started giving birth. I was only given pain medication and sent home.

Whenever I had my period, I would force myself to school, but at home, no one would sleep. I would take seven days off work and stay home.

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 removed and I was told there was nothing else, but with every surgery, the pain got worse.

I would take seven days off work and would stay home. I had just three weeks in a month because for one week I was out of action. I could not walk, talk or move. 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. I want to encourage everyone suffering from endometriosis in Nigeria and Africa, to be informed, and do whatever they can to minimise the pain and suffering of endometriosis medically and traditionaly.

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