One in ten women. Up to ten years without a diagnosis. A condition that affects 200 million people worldwide. It’s time we talk about endometriosis!
South Africa (06 March 2026) – March is Endometriosis Awareness Month. It’s an important time for all of us to learn more, speak up, and show up for the women in our lives living with the diagnosis, or still looking for answers.
Whether you have endometriosis or love someone who does (and the stats reflect that you might), this month is your chance to become a little more informed about the chronic illness that many women live with for years without receiving a diagnosis.
Understanding a condition this common and this misunderstood is how we start making things better for everyone affected by it. An estimated 200 million women worldwide are living with endometriosis. Too many of them waited years for a diagnosis. Too many were told their pain was normal. That stops when more of us know better…
In simple terms, endometriosis is when tissue similar to the lining of the uterus starts growing outside of the uterus, where it shouldn’t. In every menstrual cycle for an individual living with the condition, that tissue thickens, breaks down, and bleeds. With nowhere to go, it gets trapped. That causes inflammation, scar tissue, and pain that can be debilitating.
It can affect anyone who menstruates, from their very first period all the way through to menopause, yet it’s still one of the most under-diagnosed, misunderstood conditions around.
That’s exactly why being informed matters. It’s why we’re sharing these seven things everyone should know!
7 Things Everyone Should Know About Endometriosis
1. It affects around 190 million women worldwide – that’s 1 in 10
Endometriosis is way more common than most people realise. The World Health Organization puts it at roughly 10% of reproductive age women globally which is around 190 million people. And yet it’s still widely under-diagnosed, misunderstood, and way too often dismissed.
2. In very rare cases, endometriosis has also been found in men
It’s true. While endometriosis is almost entirely associated with women, there are a tiny number of documented cases in men. A medical case review found only 16 previously reported cases worldwide – so it is incredibly rare. In those cases, the tissue was most often found near the bladder, lower abdominal wall, or inguinal region. The most common risk factor identified was prolonged oestrogen therapy, though other hormonal factors have been suggested too.
3. Getting a diagnosis can take up to 7–10 years
This is one of the biggest concerns. A systematic review found that delays of up to 7 to 10 years between the first symptoms and an actual diagnosis are well-documented. It takes so long because symptoms vary wildly from one person to the next. Period pain also gets normalised by doctors, by family, by society at large. There’s still no simple, universal way to diagnose endometriosis. Some research suggests timelines are slowly getting shorter in certain places, which is encouraging. But for millions of women, the wait is still far too long. Years without answers means years of worsening symptoms and the feeling that nobody believes you.
4. It doesn’t just affect the pelvis – it can grow in other areas of the body too
Most people assume endometriosis grows in the pelvic region only – the ovaries, fallopian tubes, the lining of the pelvis. That is where it most commonly shows up. But the WHO confirms it can also appear in the abdomen and, in some cases, the chest. These less obvious presentations make it even harder to identify.
5. The cause is still unknown – but it’s linked to the immune system
Scientists still don’t fully know what causes endometriosis. What they do know is that the immune system seems to play a significant role. The WHO notes that people with endometriosis tend to have higher rates of other immune-related conditions like lupus, multiple sclerosis, and inflammatory bowel disease, suggesting it’s part of a bigger picture. There’s also a genetic thread. Having a family member with endometriosis is a known risk factor.
6. Its symptoms overlap with a lot of other conditions – which is part of why it’s so often missed
Endometriosis symptoms are similar to the symptoms of other conditions. Pelvic pain, heavy periods, bloating, fatigue, and bowel changes overlap with a whole range of other conditions. Endometriosis can commonly be confused with adenomyosis, fibroids, pelvic inflammatory disease, and even irritable bowel syndrome. This is a big part of why so many women wait so long for a diagnosis. Their symptoms get pinned on something else, or worse, they’re told it’s normal. It’s not.
7. There’s no cure, but it can be managed
There’s no cure for endometriosis right now, but there’s a lot that can be done. Pain relief, hormonal therapies, and surgery are all options that can genuinely improve quality of life. And beyond the clinical things, physiotherapy, counselling, and connecting with others who get it can make a real difference too. Treatment looks different for everyone. It depends on the person, the symptoms, and other circumstances. Nobody should have to figure it out alone. If you think you might have endometriosis, find a doctor who takes you seriously. And if the first one doesn’t, please keep on going until you find one who does. Having support from people who understand is important – groups like this one for South Africans create a safe space for women to share their endo journey with others.
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