More than 6 million women in the United States have endometriosis — a condition in which tissue similar to the lining of the uterus grows outside of it, causing chronic pain, infertility, and a constellation of other debilitating symptoms. The average time from symptom onset to diagnosis is between seven and ten years.
Read that sentence again: seven to ten years.
Polycystic ovary syndrome affects an estimated 5 to 10 percent of women of reproductive age — roughly 5 to 6 million in the United States. It is one of the most common endocrine disorders in women. The majority of cases go undiagnosed.
Uterine fibroids affect up to 80 percent of women by age 50. Black women develop fibroids earlier, more frequently, and with more severe symptoms than white women. The research investment in these conditions — relative to their prevalence and clinical impact — has been consistently inadequate.
Why the Delays Persist
The diagnostic delays are not primarily a technological problem. They are a cultural and institutional one.
Women who present with pelvic pain are routinely told that their pain is normal, expected, or psychosomatic. Menstrual disorders that significantly impair functioning are framed as inconveniences. The clinical community has been slow to update diagnostic approaches, partly because the research base has been underfunded, and partly because the symptoms primarily affect women — and women’s pain has historically been discounted in clinical settings.
The data on this are unambiguous. Studies consistently document that women’s pain is more likely to be undertreated than men’s, that women wait longer for pain management in emergency departments, and that women are more likely to receive psychiatric referrals when they present with unexplained symptoms. These are not isolated failures. They are patterns.
The Research Investment Problem
NIH funding for reproductive health research has not kept pace with the burden of disease. Endometriosis, which affects more people than diabetes does in women of reproductive age, receives a fraction of the research investment that comparable conditions attract.
This is not a secret. Researchers and advocates have documented the funding gap for years. The political difficulty is that the conditions are associated with menstruation and female anatomy — topics that remain culturally uncomfortable in ways that delay both funding conversations and clinical education.
The consequence is that women are diagnosed late, treated inconsistently, and managed with approaches that reflect limited evidence rather than a serious research investment in understanding the conditions they have.
What Disruption Looks Like
Eliminate the diagnostic delay. This requires updating clinical training to recognize endometriosis, PCOS, and uterine fibroids as serious medical conditions warranting urgent investigation — not symptomatic management that stretches across a decade. It requires access to gynecologic care, which is itself an access and insurance coverage question.
Fund the research. The NIH should increase investment in reproductive health research commensurate with the scale of the conditions. Congressional appropriators who care about women’s health have a specific, measurable action available to them: increase the budget for the Eunice Kennedy Shriver National Institute of Child Health and Human Development and ensure that reproductive health conditions receive funding proportional to their prevalence.
Center Black women’s experience. Fibroids are a racial equity issue as well as a women’s health issue. Black women are underrepresented in fibroid research, underserved in fibroid care, and face worse outcomes. Any reproductive health agenda that does not address racial disparities explicitly is incomplete.
Normalize the conversation. The single greatest driver of diagnostic delay is women who have been told their pain is normal for long enough that they believe it. Changing that requires clinical culture change, patient education, and — yes — a willingness to talk publicly about conditions that have been kept in the quiet category for too long.
The data on reproductive health conditions are not ambiguous. The scale is enormous. The suffering is preventable. The delay is a choice.
