Living with Endometriosis in Zimbabwe

Sostina's Story

The following personal essay was written by my mentee, Sostina Matina, who is about to complete her PhD in South Africa. So few African women have written about living with endometriosis, and this story depicts one woman’s story. However, it underscores that women around the world live with these painful conditions—even when their pain is called another name or people seek diverse treatments.

Photo by Stefano Pollio on Unsplash

[Written by Sostina Matina]

Sostina’s Endo Story

I am a Shona woman from Zimbabwe. I started having pain in my abdominal region in my teens, and it only intensified through my twenties and thirties. For years, I was shunned because of my pain—my heavy periods, bloated belly, collapsing during my periods and disabling aches—but few people believed my pain or understood my disability. This is not an uncommon story: for centuries, endometriosis was referred to as a wandering uterus, suffocating womb, ovaritis, pelvic insanity, menstrual madness, and hysteria itself. In western medicine, endometriosis was recognized in the late 1880s, and then identified as a biological condition in the early 1920s. In many African regions, however, endometriosis is rarely diagnosed and remains misunderstood.

Yet, endometriosis is extraordinarily common. It’s estimated that one in ten women around the world experience endometriosis, and that it takes between six and ten years from one’s first symptoms to be correctly diagnosed. Endometriosis is particularly hard to diagnose because it is characteristically hidden: it’s a disease where tissues like the lining of the uterus grow outside the uterus, causing extraordinary pain in the pelvis that prevents some people from getting pregnant or causes painful sex. It can start with the first menstrual period, which was most likely the case for me, and it can continue until or after menopause. This leads to inflammation and scar tissue forming in the pelvic region and (infrequently) beyond. What’s troubling for people like me, living with endometriosis for decades, is that our pain thresholds become extraordinary. For so long, we are dismissed and find limited clinical or medical intervention for our pain. While this is common in Western contexts, this delay in care is amplified tenfold in Africa in part because of social, cultural, and medical challenges.

For me, things began to unravel when my mother died at the age of nine, and my father died when I was fourteen. I was sent to live with my father’s brother. His wife was abusive, making me scrub the floors in exchange for supper and often making me go hungry as I watched their family eat. When menarche began, the blood came fast, and there was no one to care for me and teach me how to use pads. I used rags that I could then wash and reuse, but the pain was unbearable. No one believed that my pain was real; instead, my aunt told me to adapt to my developing body and continue, I was expected to do all chores. At times, I would collapse at school or be sent home, as normal. I slowly withdrew from the world.

I later decided to run away from that home and went to my grandmother’s place and in a different city. It was only when my grandmother noticed the marks on my hands and body, from the beating from my aunt, that they believed what I was going through. She allowed me to stay with her. My paternal side only believed my story of abuse when my aunt was arrested and trending on social media for beating a student and leaving him with a wound in the head. I went from feeling unsafe every day to feeling the warmth and love of my grandmother’s home. She bought me pads and taught me how to use them. She wrapped me in love, and I began to heal. I learned how to manage my monthly pains. I never saw a doctor. I had normalised the pain.

It was two decades later when a doctor first believed that there was something seriously wrong with me. I had survived extraordinary trauma and demonstrated profound resilience, proving to be the first in maternal side of the family to attend university and complete a master’s degree. It wasn’t until I began working on my doctoral degree in South Africa, in 2019, when a doctor first suggested I use a contraceptive to control her pain—I was twenty-nine. The doctor prescribed to me Dianne 35.

In Shona culture, contraceptives are taboo—and my family shunned me. They didn’t understand what caused my belly and feet to swell. During the family functions I was ridiculed for having a big belly because they believed it was a sign of promiscuous activities. However-the swollen belly is a common symptom of endometriosis—but I didn’t know that and neither did my family. While the pills alleviated some pain, the swelling in my feet got worse. When I queried the doctor, he told me not to worry about my the swollen feet because everyone would be looking at my clear skin. A year later, I was in the emergency room with so much pain, the doctors had to take it seriously. They opened me up and found fibroids and ovarian cysts—they did an ablation and inserted the Mirena IUD. Relieved that the tumours were gone, I worried about the IUD in part because in Shona culture menstrual blood is perceived to clean impurities in the womb (and stopping periods would then cause the womb to be dirty and diseased). Family and friends often questioned me on where the impurities where going and might be the reason I was still sick. Nevertheless, I was discharged four days later and stayed with a friend during my recovery unfortunately I was readmitted again days later because of excessive vomiting and nausea. My second stay in the hospital was terrible, I reacted to the medication provided by the drip-the nurses refused to remove the drip despite my swollen hand. It was until my doctor came back the following day and found me shaking that they removed the drip and that there were not supposed to deny me food for 24 hours.

I returned to the clinic two years later with similar bloating and familiar pain. A white doctor conducted an abdominal scan. The scan showed nothing. The doctor indicated that I couldn’t have a recurrent bout of endometriosis because my surgery was so recent. He told me it was all in my head. I was frustrated and in pain; I asked, “why is my leg swollen if it’s in my head?” He suggested that it was because I was obese and should meet with a nutritionist. The white doctor suggested I return after losing weight. “But the pain is so intense now,” I pleaded. I further indicated that my weight came on quickly after the pain in the leg became so intense that I couldn’t walk or exercise.

After that, I found a black doctor in the same clinic. He went through my medical records and noticed fibroids from a scan the year before that could be causing the pain. He ordered an MRI scan but I couldn’t afford to pay for it (student health insurance did not cover the MRI). This was one of the darkest points in my life: I felt excruciating pain and often didn’t have enough money for food, let alone an MRI scan. One night, in desperation, I took too many pills to end the pain. My cousins found me and brought me to the Emergency Room. This is when I first spoke to a counsellor about my pain. Because of the severity of my situation, they rushed to get an MRI so they could identify and remove the fibroids and cysts that had become the size of tennis balls in my body. It was only during this moment of absolute crisis that I was able to be seen, treated, and cared for within the health system in South Africa.

This story is one example of many where endometriosis is a health condition that is largely ignored throughout the African continent or dismissed as a bad period. While individual stories like mine are lacking, so are legitimate epidemiology studies of endometriosis among African women. It’s so hard to trace. This is in part because the best way for diagnosing endometriosis is through a laparoscopic examination that is costly and unavailable in many clinics and hospitals throughout the African continent. As a result, women are often dismissed for complaining when their endometrial lining grows beyond the ectopic area in part because everything else in their health examination appears normal (or not “abnormal”). Certainly, this is complicated by limited access to and trust in healthcare providers among some people, thereby pushing people to seek care only when they become very sick.

While this is common among many health conditions in contexts like Zimbabwe, where I grew up, such experiences are amplified for conditions like endometriosis that are difficult to diagnose and treat; this is complicated further still by taboos existing around what signs of endometriosis exist (such as a swollen belly) and possible treatments (like hormonal therapy). The other challenge in the African context is that menstruation is often seen as a private journey that is taboo to openly discuss. Women from a young age are taught to hide their symptoms from males in the family and not to discuss the pain. I remember that, as a child, my aunt would tell me that if anyone asked, I should say it was a terrible headache. Period pains are often normalised, and failing to cope or continue as normal is seen as a weakness.