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.
For many women, receiving a diagnosis of endometriosis is not the end of the journey, but the beginning of a new and often complex reality. The condition, which can cause chronic pain, fatigue and infertility, has no cure. Treatment focuses on managing symptoms, preserving fertility, and improving quality of life, but outcomes can vary widely from patient to patient.
“We sometimes see both undertreatment and overtreatment,” says reproductive medicine specialist Dr Sulaiman Heylen. “Endometriosis does not always need treatment just because it is there. We treat the woman and the problem she is experiencing.”
What are treatment options for endometriosis?
Treatment options can include pain management, hormonal therapy, and surgery. But even these approaches come with difficult trade-offs. Repeated surgeries, for example, can reduce ovarian reserve, leading to fertility issues. “I have seen patients who have had multiple surgeries and later struggle with infertility because their egg reserve has been affected,” Heylen says.
Specialist care is also limited. According to gynaecologist and endometriosis specialist Dr Viju Thomas, complex surgical treatment requires highly specialised training. “There are probably only about 10 surgeons in South Africa who are equipped to perform these operations at the level required for complex cases,” he says.
This shortage, combined with gaps in training and awareness, can make effective treatment difficult to access. “I think the problem lies with the institutions that train healthcare professionals,” Thomas says. “Many clinicians do not receive adequate training on how to recognise endometriosis.”
South Africa’s broader healthcare challenges also play a role. With significant resources directed towards infectious diseases such as HIV and tuberculosis, chronic conditions like endometriosis often receive less attention. “When a health system is dealing with urgent public health crises, chronic diseases can fall lower down the priority list,” Thomas says.
Living with uncertainty
For patients, these systemic challenges translate into uncertainty. “You never quite know when the next wave of pain will come,” says Malebo Mukhari, who lives with endometriosis. “That unpredictability makes it difficult to plan your life.”
The condition can also have a profound emotional impact. “It’s not just physical,” she says. “It affects how you live, how you plan, how you see your future.”
Infertility is one of the most difficult aspects for many patients. “It’s really hard,” Mukhari says. “There’s a lot of uncertainty about what the future will look like.”
For Robin Peters, who lived with symptoms for nearly two decades before being diagnosed, the experience has been defined by both physical pain and years of dismissal. “I have sat through work meetings in pain I did not show and cancelled plans with people I love because my body simply could not cope,” she says.
No easy answers
Even after diagnosis, she says, patients are often offered simplified solutions. “People suggest a supplement or say a surgery fixed them,” she says. “But for many of us there is no simple solution.”
Some patients explore lifestyle changes, including anti-inflammatory diets, in an effort to manage symptoms. However, access to these options can be limited by cost and time.
Despite the challenges, specialists emphasise that many patients can still achieve meaningful improvements with appropriate care. “Endometriosis can be a terrible disease,” Dr Heylen says, “but there are many effective treatments today. In most cases women can become largely pain free and many are still able to have children.”
Still, for many women, the most important change they hope to see is not just better treatment, but greater understanding. “Endometriosis is often dismissed as just a bad period,” Mukhari says. “But it is a complex chronic condition that can affect nearly every part of a person’s life.”
For Peters, the message is simple. “What we need is not a remedy,” she says. “What we need is to be believed.”
You can read the first article in this series here, which unpacks what endometriosis is and why it is so difficult to diagnose.
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.
