Decades Behind: The Shameful Neglect of Endometriosis Research

A Landmark $50 Million Donation Offers New Hope for One of Medicine's Most Overlooked Conditions

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I've witnessed some remarkable advancements in medicine since I started medical school in 1986.

I can remember early in my career seeing many women, with devastating effects of multiple sclerosis (MS), referred to me for recurrent bladder infections related to catheter use or several vaginal infections due to their use of steroids. Over the past ten years or so, these referrals began to decrease as treatment for MS advanced. I now see far fewer women with MS, and when I do, they are generally noticeably healthier than a decade before and are mostly referred to me because of an uncommon vaginal side effect of the medication keeping their MS at bay. I don’t mean to downplay the pain and frustration of vaginal mucositis, the drug-induced complication, but it’s amazing to see this a dramatic advancement in the care of MS for many women over my medical lifetime.

Crohn’s disease, an aggressive inflammatory condition of the gastrointestinal tract used to send women to my office with fistulas, connections between their bowels and vagina, or severe pelvic pain from inflammation, abscesses in the pelvis, or multiple surgeries (and often all three). It seems that I have seen fewer and fewer women with these complications, likely due in large part to the fact there there are now multiple biologic drugs available as first-line therapy.

I now see people with a history of melanoma in their chart, whereas most of those patients never lived long enough to have “history of melanoma” in their medical record.

Courtesy of the incretin-based therapies (GLP-1s), I’m seeing fewer people with type 2 diabetes for recurrent yeast infections.

And of course, I see far fewer women with radiation-related consequences from the treatment of cervical cancer, because cervical cancer rates have dropped 62% due to the HPV vaccine (in other countries where vaccine coverage is even better, the drop has even been more dramatic). When I was a medical student, we didn’t even fully understand the connection between HPV and cervical cancer, and now we have a vaccine. If we could get everyone on board, we could eradicate HPV-related cervical cancer, which is about 95% of cervical cancers.

These advances feel like miracles, except they are the result of an investment in basic science, which is the lab work that helps us understand what is going wrong at a cellular level, and then subsequent investment in clinical trials for therapies that are based on this basic science. It’s also important to point out that when governments invest in basic science, it signals to pharmaceutical companies that this is an area of interest.

All of these incredible scientific breakthroughs and the lives and agony they have spared stand in sharp contrast to what has happened to endometriosis care during the almost 40 years of my medical career, because here, close to nothing has changed. For example, I see some surgeons insist that superficial peritoneal endometriosis must be treated surgically with excision for pain relief, and their discussion implies that this is backed by robust evidence. The truth is, we don’t have the studies that we need to make this conclusion. We don’t even know if superficial peritoneal endometriosis is the same condition as ovarian endometriomas and deep endometriosis, or if it is a different entity altogether. And what’s worse is we’ve been having these same fucking discussions about superficial endometriosis since my residency, which was from 1990 to 1995. No, really. Here is what the 2022 guidelines from the European Society of Human Reproduction and Embryology say about superficial peritoneal endometriosis:

And while we’ve made some progress with endometriosis, for example, the use of ultrasound and MRI for diagnosis, and understanding that some endometriosis tissue can make estrogen, hence why medications that induce temporary menopause by stopping ovulation may not always been effective, I would consider this minimal compared with what we’ve seen with the medical advancements in other areas that I’ve previously described.

Why so little change? Money and interest, and of course, those things typically go hand in hand. In January 2020, shortly after the first outbreak of COVID-19, scientists were able to sequence its genetic material. By December 2020, people were receiving vaccinations. Oh, and there wasn’t just one vaccine to choose from in the United States; there were three. In one year, the world went from ‘What the hell is this virus?” to ‘Look, we have three vaccines.” That is the power of money and interest. But of course, this wasn’t just 11 months of research, there had been years of investment and interest in RNA-vaccines, so there was a foundation of basic science for COVID-19 vaccine researchers to use courtesy of prior money and interest.

In 2002, the National Institutes of Health in the United States had a budget of $41.7 billion USD for research, with $16 million, or just 0.038% of the budget, allocated for endometriosis research. About 10% of women are affected by endometriosis, so this is an estimated $2.00 per patient per year. Crohn's disease, which, like endometriosis, can result in multiple surgeries and be devastating, received $90 million in funding, and affects about 0.3% of people. It’s no wonder we’ve seen dramatic progress with Crohn’s versus endometriosis, because the former has had real dollars, and endometriosis has received what amounts to Monopoly money in comparison. This isn’t about disease favorites, but it’s a damning testimony to the lack of investment in endometriosis research, because this difference in funding isn’t just a one-year aberration; it’s how it has been for decades. And of course, who knows what will happen now with the budget at the NIH, but all I can say for sure is that it will likely get even worse for any condition that primarily or only affects women.

It’s not as if endometriosis is some uncommon medical condition or something with minimal consequences. As mentioned, it affects about 10% of women, and worldwide, 190 million are affected. It is associated with painful periods, chronic pelvic pain (pain at times of the cycle other than menstruation), infertility, and a myriad of other painful and bothersome symptoms. About 24-35% of women with severe pelvic pain will have endometriosis, and that number is even higher for teens, where 50% or more will have endometriosis.

In addition to the suffering, endometriosis comes with a hefty price tag in the form of medical expenses, including appointments, scans, medications, and surgery, as well as the ramifications of missed work and school. It’s difficult to estimate the total dollar impact; older data suggest an additional $4,000 USD per year in healthcare costs alone for endometriosis, which, for perspective, is comparable to the costs associated with type 2 diabetes and rheumatoid arthritis. For many people, this number is likely much higher. There are many ways that endometriosis affects quality of life that are challenging to measure, for example, the fatigue, the impact of pain with sex on relationships, infertility therapies not pursued due to cost, or the psychological impact of having pain repeatedly dismissed or downplayed. For many women, endometriosis tragically and unacceptably means a life of pain.

And despite the number of women affected and these consequences we still don’t even really know what causes endometriosis or if all endometriosis is one or multiple conditions. Or why some women with endometriosis have severe pain and others have no pain at all. I can say with certainty that it’s a complex mix of genetics and environmental exposure, because that answer works for almost every chronic medical conditions and unfortunately, that doesn’t help anyone who needs therapy.

There are many theories about how cells destined to become endometriosis end up where they are and then how those cells are then triggered to cause the inflammation and scar tissue of endometriosis. For anyone interested in learning more, I have written about those theories in detail in my book, Blood: The Science, Medicine, and Mythology of Menstruation. But until we truly understand the origins of endometriosis and what triggers the abnormal inflammation, and why there are different manifestations of endometriosis, it will be hard to understand who is helped best by surgery, to develop what are known as disease-modifying drugs, or even, if we are reaching for the stars (because why not?), develop a vaccine. I mean, we’re still having many of the same conversations that we had back in the early 1990s, due in large part to of a lack of commitment to financing basic science research, a necessary first step that must occur long before the development of pharmaceuticals or other therapies.

This is the point in the article where many people are enraged (and rightly so) and wonder how we can make a difference in a patriarchal world that, quite frankly, doesn’t place the health of women in the same ballpark as the health of men. This is why I try to mention the essence of what I have written here in as many interviews as possible, and I have expanded upon it extensively in my book, Blood. I do this because the more people understand, the more pressure we may be able to generate to change the systems (although in the United States, all bets are off for that right now).

Last year, I was in Sydney, Australia, speaking at the University of New South Wales (UNSW) Science Week. One evening I had a fantastic on-stage conversation with Professor Caroline Ford about women’s health. The final question from the audience was about what I saw as the next step in women’s health. And so I launched into my plea for funding for endometriosis. I probably mentioned the rapid development of multiple COVID-19 vaccines as that is my go-to example of what can happen when we invest in basic science. Apparently, I ended with something along the lines that if Melinda Gates were listening, I’d ask her to invest a zillion dollars in endometriosis research, and I bet then we could make some progress. And I didn’t think more about that conversation until last month when I received an email from an endometriosis expert I know, who told me that my comment turned out to be the catalyst that led to a $50 million AUD donation from the Ainsworth family over 10 years to establish the Ainsworth Endometriosis Research Institute (AERI) at UNSW. This is apparently the single largest donation to endometriosis research, not just in Australia, but worldwide. Here is a quote from Anna Ainsworth:

In August 2024, I went to the Round House at the University of NSW to listen to a conversation between Professor Caroline Ford and obstetrician, gynaecologist Professor Jen Gunter, who was visiting Australia on a book launch. The closing question from the audience was what the next important step in women's health should be? Professor Gunter answered that if she was Melinda Gates and had a zillion dollars, she’d throw every cent to endometriosis research. That was a light bulb moment -- I am not Melinda Gates, but maybe our family could do something significant. I met Professor Caroline Ford on the night, and our journey began. We then met Professor Jason Abbott and started our conversations. We engaged our long-term friend, Melissa Smith from Noble Ambition, to guide us. Melissa introduced us to other philanthropists who were supporting health initiatives. These opportunities developed our understanding of what was important to us, in achieving our goal to shift the dial on endometriosis. The combination of our work with the researchers and Melissa creating a bold vision together - brought us to where we are today.

You can read more about their donation and the Ainsworth Endometriosis Research Institute here and here. Professor Jason Abbott will serve as the Clinical Director, and Professor Caroline Ford will be the Scientific Director. They are the kind of experts that endometriosis needs. This is the ideal scenario, bringing basic science together with clinical care. Here is a quote from Professor Ford about the new research institute:

“In order for doctors to deliver precision medicine they need a solid evidence base to support their decisions. This has been a challenge due to a lack of investment in research. This substantial investment will allow researchers for the first time to build a solid understanding of endometriosis biology and pathogenesis that will lead to improved detection, management and treatment.”

This donation from the Ainsworth family (thank you!) and the team assembled at UNSW represents a monumental step forward, not only in terms of dollars but also in signaling that endometriosis is a serious, life-altering condition that requires a coordinated effort between basic science and clinical care. While most of us cannot make landmark donations, we can still participate in raising awareness about endometriosis and the significant underfunding it receives compared to other medical conditions.

What we need is sustained investment, global momentum, and a collective commitment to women’s health that doesn’t waver with election cycles or societal discomfort around menstruation and pelvic pain. The Ainsworth Endometriosis Research Institute is a powerful beginning—but it must not be the end of the story, because I would love in 15 years to be giving a lecture to medical students explaining why they will rarely see someone suffering from endometriosis because of the powerful disease modifying drugs that have become the standard of care for almost the past decade. I believe that future is possible.