Editors Note: Remember Abena Benewaa Fosu? Yes! The transfinancial bougie feminist? Yes! That one. This is a personal and riveting account of her journey with endometriosis. Although she isn’t out of the woods yet, she lays it all bare in this very honest account. Relax and enjoy this 5 part story and we hope you find answers and hope on your own journey to good health…

The Genesis

This is my thousandth (not exactly but you get what I mean) attempt at trying to write a perfect intro to this, I wanted to keep trying but it hit me; why am I trying too hard to find a perfect opening for such an imperfect situation? Why not wing it like I’ve been winging it the past three years since I was medically diagnosed with endometriosis? So, this is me sharing my endometriosis journey. Buckle up, it’s going to be a rollercoaster ride.

I had my first period when I was 12 years old. If I tell you the drama surrounding that…oh wait I already did, read all about here The Bloody First Time  It was a smooth sail for some years. You know those women who have their periods and experience little to no pain? The ones we call “God’s favourite children”? Yea! I was one of those. Oh, the good old days, ha! It wasn’t until six years later after I had completed senior high school that the painful periods started. It started low and slow and gradually progressed to the point where I couldn’t function the first 2 days of my period, and then it moved to 3 days of excruciating period sickness. It wasn’t just an abdominal cramps sickness; it came with diarrhoea and vomiting, body weakness, fainting, headaches and stomach ache. I initially thought these were normal as almost every woman I knew experienced cramps during their period. Afterall about 50% of menstruating women and girls worldwide experience menstrual cramps; I saw myself as just one of the sheep in this flock you know.

Dreading that time of the month wasn’t something I dwelt on. For me, it was unavoidable and I had to just deal with it. Experiencing abdominal pains on other days of the month however, didn’t feel normal to me. This was what eventually had me seeing a doctor about pelvic pain. These weren’t ovulation cramps, they were just there every day, not painful enough to keep me confined to my bed but strong enough to make it difficult for me to fully function. On one faithful night when I was 19 years old, I had a pain flare-up and hyperactive active bladder simultaneously. I remember my dad asking me why this was happening to me, and me telling him I had no idea. It was after this night that I started what would be a series of hospital visits, seeing multiple doctors, running multiple tests and scans, and getting multiple wrong diagnosis accompanied by wrong medications, and let me tell you, the healthcare system in Ghana needs black Jesus.

I lived with my family in Cape Coast then, so I sought healthcare from the hospitals there. I went to the district hospital, the regional hospital, and the Ankaful Psychiatric Hospital. The psychiatric hospital was for treatment of allergies I had started experiencing whenever I put my hands in cold water or took a cold bath. Doctors told me it could be as a result of worm infestation but none of the numerous repeated worm medications worked. That was when I was recommended to the department of the psychiatric hospital that dealt with allergies. They found nothing that could be a trigger cause so they put me on antihistamines. I was told if things don’t improve, they may have to cut a bit of flesh from my buttocks to perform a culture and that was the last time I set foot in that hospital. Listen my ass has always been flat. How are you going to look at an almost non-existent ass and cut some? I wasn’t down for that, nope! I would later find out it is a condition called Aquagenic Pruritus and that some women with pelvic endometriosis have reported experiencing it. Imagine! It would have been a waste of ass cutting. Bullet dodged. Phew!

The antihistamines worked. My hands stopped itching and swelling whenever I put them in cold water but I still couldn’t take a cold shower without itching like a thousand bees descended on me. I realised taking hot baths helped so I went off the medication and stuck to hot baths only. When you are from a low-income family, hot showers are a luxury. I remember my sister and father often telling me I’m wasting gas and charcoal. I had to start buying my own charcoal to warm water to my bath. My sister told me several times that it was all in my head and that if I stopped thinking I would itch when I take cold showers, it would stop. It doesn’t work that way of course but you know, people who don’t understand your lived experience tend to think they know better.

I started going to the university hospital when I gained admission into the University of Cape Coast in 2010. By then the pelvic pain had become a daily thing. I got diagnosed with pelvic inflammatory disease and was given antibiotics and pain medications almost every time. I remember I once got admitted because the pain had become unbearable. The nurses on duty that night were puzzled because my labs and scans showed no abnormalities. Within my four years stay in the school, not once did any doctor I saw suspect I may have endometriosis. I was so worried about the pain and hyperactive bladder I had a lab technician friend (thanks again Sharon Kwarah) who worked at the regional hospital run several tests to be sure all my vital organs, it always came back clean. Out of frustration and exhaustion, I gave up and decided to live with the pain. I came to accept it as part of my life.

To be continued…

Abena Benewaa Fosu is a transfinancial Feminist Activist with particular interest in women’s sexual pleasure, bodily rights, queer rights, sexual and reproductive health, economic liberation and political participation.