A condition affecting roughly one in ten women of reproductive age receives a fraction of the research funding given to conditions of similar prevalence. The consequences show up in how long women wait to be believed.
Conversations about endometriosis tend to stall at the same place. There is no cure. This is the standard of care. There is not enough data.
Each of those statements is defensible on its own terms. Together they describe a field that has been waiting a long time for something to change.
The waiting is measurable. A prospective study of nearly 7,000 women published in the Journal of Women’s Health in 2026 found an average diagnostic delay of 10 years for endometriosis and 11 years for adenomyosis. In the United Kingdom, Endometriosis UK’s 2026 report put the average wait from a first GP visit to diagnosis at nine years and four months, and rising. For women from ethnically diverse communities, it was eleven years.
These are not marginal numbers attached to a rare condition. The World Health Organization estimates that 190 million women and girls have endometriosis worldwide, roughly one in ten of reproductive age. In the United States alone that translates to several million women, and the true figure is widely assumed to be higher, since the undiagnosed by definition do not appear in the count.
A Funding Gap With Visible Consequences
Dr. Sarah Daccarett, a physician who works with women managing complex hormonal and inflammatory conditions, argues that the diagnostic delay is not primarily a failure of individual clinicians. It is what happens when a condition is studied less than its prevalence warrants.
The comparison most often cited is Crohn’s disease. Writing in the AMA Journal of Ethics, researchers noted that Crohn’s affects around 0.21% of the US population and received $90 million in NIH funding in 2022, equating to roughly $130 per diagnosed patient. Endometriosis, affecting a far larger group, received $16 million the same year. That works out at between one and two dollars per patient.
The disparity is not the result of any single decision. It reflects decades of research priorities set when women were systematically underrepresented in clinical trials, and it compounds over time. Fewer studies produce weaker guidelines. Weaker guidelines produce less confident diagnosis. Less confident diagnosis produces longer delays, and longer delays produce a patient population whose experience is harder to study because it was never recorded properly in the first place.
What Delay Actually Costs
A decade is not an abstraction. It covers the years in which many women are establishing careers, forming relationships and making decisions about whether to have children, often while managing pain they have been told is normal. Endometriosis is also associated with infertility, which makes the timing of diagnosis consequential in ways that extend well beyond symptom relief.
In Daccarett’s experience, the pattern women describe is consistent. They raise symptoms and are told the pain is ordinary. They are offered hormonal suppression or, eventually, surgery. When neither resolves the problem, the conversation frequently returns to stress, or to the suggestion that they may be describing their symptoms more dramatically than they experience them.
The research reflects that. Studies have found that Black women face longer delays than average and are still sometimes told endometriosis is a condition affecting white women, a belief that has no basis in the epidemiology but persists in clinical practice.
Signs of Movement
There are indications that the position is beginning to shift. The American College of Obstetricians and Gynecologists published its first clinical guidance on endometriosis diagnosis in February 2026. Diagnosis rates in the United States rose 32% between 2017 and 2024, according to an analysis of 25 million patient records. Researchers in the UK have developed a non-invasive urine test intended to shorten a diagnostic process that currently takes years.
None of these is a cure, and none is presented as one. What they represent is a category of progress that endometriosis care has largely been denied: incremental improvement, arrived at without waiting for complete understanding.
Progress Without Certainty
Medicine advances incrementally as a matter of routine. Preventive therapies for migraine were offered long before the mechanism was fully understood. Symptom-modifying treatments for autoimmune conditions were adopted while the underlying questions remained open.
Daccarett’s argument is that endometriosis has been held to a different standard, and that the absence of data has been treated as though it were evidence of absence. In a field this underfunded, she contends, the two are not the same thing.
That distinction matters for how women are spoken to in a consulting room. There is a difference between telling a patient that a question has been studied and answered, and telling her that it has not been studied at all. Only the second is true of much of endometriosis care, and women are rarely told which one applies.
What Would Change Things
The interventions most likely to shorten the delay are unglamorous. Clearer diagnostic criteria. Screening that is prompted rather than requested. Training that treats severe menstrual pain as a reason to investigate rather than a fact of life.
Above all, a willingness to say plainly that a decade is too long, and that the reason for it lies in how the condition has been funded and studied rather than in the women describing it. That is a shift in posture rather than a scientific breakthrough, and it is available now.
Endometriosis may not have a cure. It does have 190 million patients, a diagnostic delay measured in years, and a research budget that does not reflect either. Those are solvable problems, and solving them does not require waiting for certainty.
Dr. Sarah Daccarett, MD, is a physician and the founder of Inner Balance, a women’s health company providing telehealth care designed around female biology. More at www.innerbalance.com
