A Disease That Medicine Has Failed to Take Seriously
Endometriosis — a condition in which tissue similar to the uterine lining grows outside the uterus — affects an estimated 190 million women and people with uteruses globally. It causes chronic pelvic pain, painful periods, pain during intercourse, and in many cases infertility. It is not rare. It is not benign. And the average time from symptom onset to diagnosis remains 7 to 10 years — a gap that reflects not diagnostic complexity but clinical culture.
Women who present with severe pelvic pain are routinely told their symptoms are normal, psychological, or exaggerated. Pain that would prompt aggressive investigation in other contexts is dismissed as an inevitable feature of female biology. By the time endometriosis is diagnosed, many women have undergone years of ineffective treatments, unnecessary procedures, and accumulating damage to quality of life, fertility, and professional function.
Uterine Fibroids: The Other Underdiagnosed Epidemic
Uterine fibroids affect up to 80% of women by age 50, with Black women experiencing higher rates, earlier onset, and more severe symptoms than white women. Despite their prevalence, fibroids are significantly underfunded in research relative to their disease burden. Many women are not told about the full range of treatment options — including uterus-sparing interventions — before being directed toward hysterectomy.
The convergence of racial bias and gender bias in fibroid care is documented: Black women with fibroids wait longer for specialist referral, are less likely to receive minimally invasive treatment, and are more likely to experience serious surgical complications when they do receive care.
Pelvic Floor Health
Pelvic floor disorders — including urinary incontinence, pelvic organ prolapse, and pelvic floor dysfunction — affect approximately one-third of women during their lifetimes. They are among the most common causes of disability in older women and one of the most undertreated, in part because of stigma and in part because women are routinely told that these conditions are a normal consequence of childbirth or aging rather than medical conditions warranting treatment.
What We Track
We monitor NIH research funding for endometriosis, uterine fibroids, and pelvic floor disorders, diagnostic guideline developments, and policy affecting access to specialist gynecological and urogynecological care.
