We’ve all got that one friend (or two or three) who complains about unbearable period pain. If they’re lucky enough to have a diagnosis, we may have heard of “endo” or endometriosis, to give it its full name. But, unless you are that friend, it’s difficult to understand the extent of the pain and what the illness means for women affected by it.
In this two-part series, /explain/ speaks to the experts to find out more about the disease. What exactly is endometriosis, why is it so difficult to diagnose, and are there any treatment options? We also talk to people living with the illness to understand its impact on their lives and how they manage it.
What is endometriosis?
As many as one million South African women could be living with severe, debilitating endometriosis, yet the condition remains widely misunderstood and frequently undiagnosed.
Endometriosis affects an estimated one in 10 women globally, according to the World Health Organisation. In South Africa, where reliable data is still lacking, that could translate to millions of patients, many of whom spend years navigating the healthcare system without answers.
“It is an extra-uterine disease,” explains gynaecological and endometriosis specialist Dr Viju Thomas. “The tissue that normally grows inside the uterus grows elsewhere in the body, where it should not be.”
The condition is chronic and inflammatory, with no cure. It can cause severe menstrual pain, chronic pelvic pain, fatigue, digestive issues, and infertility. For many women, the experience of the disease is extremely complex and not well understood.
Relentless pain
Law student Zoe Smith has undergone two surgeries and lost one ovary to endometriosis. But her pain has often been dismissed. “My periods are worse than appendicitis,” she says. “I once pushed through working with appendicitis because I thought it was just my period pain.”
Smith believes the condition is still not taken seriously enough. “I’ve read that the pain can be worse than childbirth, kidney stones, or even a heart attack. I just wish people would take endometriosis seriously.”
For many patients, the pain is not only physical but deeply disruptive. “It’s so much more than just pain,” Smith says. “It’s grieving the normal life you thought you would have. It’s the fear – the uncertainty about fertility and the future.”
Charlene Grobler, who was diagnosed with stage-four endometriosis after years of unexplained symptoms, describes the pain as relentless. “The closest way I can explain it is that it feels like blunt fish hooks twisting inside your abdomen,” she says. “From the outside you can look completely normal, but internally the pain can be extreme. The fatigue alone can feel like you’ve run a marathon before your day even begins.”
Malebo Mukhari says the disease affects nearly every part of daily life. “It’s a deep exhaustion that makes even routine tasks overwhelming,” she says. “Managing the symptoms while trying to live a normal life requires constant resilience.”
Despite the severity of these experiences, diagnosis is often delayed, sometimes by decades.
Karen Nieuwoudt recalls experiencing symptoms as a teenager. “I remember having pain as early as 13 or 14,” she says. “Every month the pain was so severe that classmates had to carry me because I couldn’t walk.” It took two decades before she was diagnosed. “Some [people] say it takes up to 10 years,” she says. “For me it took 20.”
An underdiagnosed disease
According to specialists, these delays are not unusual. “Endometriosis is one of the most underdiagnosed diseases we see,” says reproductive medicine specialist Dr Sulaiman Heylen. “Many women go to multiple doctors before they finally receive a diagnosis.”
Part of the challenge lies in how the disease manifests. Symptoms vary widely and often affect different parts of the body, leading patients to seek help from multiple specialists. “Patients may see gastroenterologists for digestive issues, psychologists for anxiety, and gynaecologists for pelvic pain,” Thomas says. “But no one connects the full pattern of symptoms.”
This fragmented approach can leave patients going from pillar to post throughout the healthcare system, often for years, without gaining clarity. “The system is not built to hear them,” Thomas says. “Women may present with several symptoms, but the health system often fails to connect those symptoms together.”
How prevalent is it?
The scale of the issue is significant. With roughly 32 million women in South Africa, applying global prevalence estimates suggests about 3.2 million could be living with endometriosis.
Thomas estimates about 30% of patients experience severe disease. That could mean close to one million women are living with debilitating symptoms, many of whom are unable to work or participate fully in daily life. “Some patients experience such severe chronic pain and fatigue that maintaining regular employment becomes impossible,” Thomas says.
Yet despite its impact, the condition remains under-researched and poorly understood in the country. Much of the awareness, patients say, is being driven by women themselves, through online communities where thousands share their experiences of pain, misdiagnosis, and not being believed.
For many women, not being believed or understood is one of the most difficult aspects of the disease. “If I had to explain how endometriosis has affected me,” Nieuwoudt says, “I would say it has taken away all my hopes and dreams.”
Diagnosis remains a major barrier, but even women who are diagnosed face complex and often difficult treatment decisions.
Our second story in this series explores what treatment looks like and how women navigate life after diagnosis. Read it here.
Catherine White is an independent South African journalist and producer with experience reporting internationally. Her work focuses on investigative reporting, accountability journalism and explanatory storytelling that unpacks complex issues.
