endometriosis isn't new. we've just spent four thousand years explaining it away

One of the most common things I hear about endometriosis, and I hear it from friends, from strangers at dinners, occasionally from people who should know better, is some version of "it's a new illness, so many women have it now." I understand why people think that. It's in the news, it's all over your feed, and if you're a woman in your twenties or thirties in Australia right now it can feel like half the people you know are either waiting on a laparoscopy or recovering from one. So it looks contemporary. It looks like something that arrived with us, and there's a quiet suggestion underneath that idea, one that nobody says out loud, that maybe we brought it on ourselves, or talked ourselves into it, or that the internet handed a generation of women a diagnosis they didn't need.

That couldn't be further from the truth, and once you know the actual history you can't really un-hear it, because the story of endometriosis isn't a story about a disease appearing. It's a story about a disease being noticed, over and over again, for thousands of years, and then being explained in a way that let everyone stop looking.

The oldest medical document we have describes it

The earliest surviving text that looks like it's describing endometriosis is Egyptian, a gynaecological papyrus dated to somewhere around 1855 BCE, which makes it one of the oldest medical documents in existence full stop. It describes women with pelvic pain, menstrual trouble and difficulty conceiving, and while nobody can retrospectively diagnose a woman who's been dead for nearly four millennia, the cluster of symptoms is the one any endo patient would recognise. A few centuries later the Hippocratic Corpus, the body of Greek medical writing attributed to Hippocrates and his school from around the fifth and fourth centuries BCE, goes into more detail. The gynaecological treatises talk about severe menstrual pain, abnormal bleeding, pain that radiates, women who couldn't fall pregnant, and a surprisingly sophisticated set of observations about how these things clustered together. A landmark historical review by Camran Nezhat and colleagues, published in Fertility and Sterility in 2012, went through these ancient sources line by line and concluded that what the Hippocratic physicians were describing bears a striking resemblance to what we now call endometriosis (Nezhat, Nezhat & Nezhat, 2012).

So the symptoms were on the record before Rome was built. That's the part I keep coming back to. The problem was never that nobody noticed women were in pain. The problem was what they decided it meant.

The wandering uterus, and the word we still haven't shaken

The Greeks needed an explanation for what they were seeing, and the one they landed on shaped the next two thousand years of medicine. They believed the uterus could move. Not metaphorically, physically. It could wander around inside the body, drift upwards and press against the heart or the lungs, and wherever it went it caused trouble, physical symptoms and emotional ones alike. Plato describes it in the Timaeus as something close to a living creature with its own appetites, and the Hippocratic writers prescribed sweet-smelling substances near the vagina and foul ones near the nose to coax the organ back into place. The Greek word for uterus is hystera, and that is where the word hysteria comes from. A woman's suffering, in this model, was the direct product of the organ that made her a woman, and her mind and her pelvis were treated as a single unstable system.

I find it genuinely hard to overstate how long that idea lasted. It outlived the Greeks, it outlived the Romans, it survived the medieval period and the Renaissance and arrived in the nineteenth century more or less intact, dressed up in new vocabulary. For the better part of two thousand years, gynaecological pain was understood as something women were simply meant to endure, and when it was taken seriously at all it was read as a moral or psychological failing rather than a physical disease. In nineteenth-century Paris, the Salpêtrière, the hospital where Charcot built his career studying hysteria, was where women with these diagnoses were sent, and some of them ended up on the operating table for it. A woman with crippling pelvic pain wasn't understood to be sick. She was understood to be unstable, and she was treated accordingly.

Medicine did catch up, slowly and then not really

The first real physical evidence came in the 1860s, when the Austrian pathologist Karl von Rokitansky, working through post-mortem examinations, described lesions containing glandular tissue that looked exactly like the lining of the uterus, except that they were growing outside it. That is the first morphological description of the disease that we have, and it's worth pausing on the fact that it came from pathology, from women who had already died, rather than from anyone listening to a living one.

It then took another sixty years for anybody to give it a name. In a series of papers between 1921 and 1927, the American gynaecologist John Sampson coined the word endometriosis and proposed what's still one of the central theories about how it develops: that menstrual blood can flow backwards through the fallopian tubes into the pelvic cavity, carrying endometrial cells with it, which then implant and grow where they shouldn't (Sampson, 1927). Retrograde menstruation doesn't explain every case, and it certainly doesn't explain why most women experience it and only some develop the disease, but it gave the condition a mechanism and a name, and you would think that would have changed things.

It didn't, or not for a very long time. For most of the twentieth century endometriosis was regarded as a mild condition, and menstrual pain in general was so thoroughly normalised that the idea of investigating it seriously barely registered. Period pain was something you took a Panadol for, or later a Naprogesic, and got on with. It's only really in the last two or three decades that endometriosis has been reframed as what it is, a chronic inflammatory disease with a whole constellation of effects, severe pain, persistent fatigue, bowel and bladder symptoms, a real hit to quality of life and in some cases infertility (Zondervan et al., 2018). The imaging has improved enormously, specialised ultrasound and MRI can now pick up complex disease that used to be invisible until surgery, and the treatment conversation has finally started to include the words "quality of life."

So where does that leave us

Endometriosis affects roughly one in ten women of reproductive age worldwide, which works out to something close to 190 million people (Zondervan et al., 2018). In France, where a national strategy to tackle the disease was launched in 2022, the health research agency Inserm puts the figure at around two million women in that country alone. In Australia the estimate is over a million. And the average delay between a woman's first symptoms and her diagnosis, across most of the countries that have bothered to measure it, still sits somewhere between seven and ten years.

When researchers ask women why it took so long, the answers are remarkably consistent, and they're the reason I wanted to write this. Women describe being told their pain was normal. That it was stress. That it was anxiety. That everyone's periods hurt and they needed to toughen up. Study after study has found that this dismissal, rather than any gap in the science, is the single biggest driver of delayed diagnosis. Which, if you listen closely, is the wandering uterus again. The explanation hasn't changed in two and a half thousand years, it's just being delivered in a nicer waiting room.

There is a version of this story that ends on hope, and I think it's a real one. A research project called PRECURSOR is about to start in France, following adolescent girls with severe period pain to see whether treating it early and properly, with a combination of approaches rather than a script and a pat on the head, can stop it from ever becoming chronic pelvic pain, and maybe reduce the risk of endometriosis developing at all. Which is a long way of saying that for the first time, someone has decided that a fourteen-year-old describing her own body counts as evidence.

So no, it isn't new. We've had the symptoms for four thousand years and the name for a hundred. What's actually new is that women have stopped accepting the explanation.

This piece is part of Hysterical Tales for Hysterical Women, June's series on the history women's health forgot to tell you.

References

Nezhat, C., Nezhat, F. & Nezhat, C. (2012). Endometriosis: ancient disease, ancient treatments. Fertility and Sterility, 98(6, Suppl.), S1–S62.

Sampson, J. A. (1927). Peritoneal endometriosis due to the menstrual dissemination of endometrial tissue into the peritoneal cavity. American Journal of Obstetrics and Gynecology, 14(4), 422–469.

Zondervan, K. T., Becker, C. M., Koga, K., Missmer, S. A., Taylor, R. N. & Viganò, P. (2018). Endometriosis. Nature Reviews Disease Primers, 4, 9. https://www.nature.com/articles/s41572-018-0008-5

Inserm (2024). Endométriose. Institut national de la santé et de la recherche médicale.

Hippocrates. Diseases of Women (Gynaikeia), in the Hippocratic Corpus, c. 5th–4th century BCE.

Plato. Timaeus, 91c.

The Conversation (2026, 2 September). Endometriosis: a long-ignored disease, despite symptoms that can be traced back to ancient times.

Diagnostic delay estimate: https://journals.sagepub.com/doi/abs/10.1177/15409996251380129