“Guess what? I have PCOS,” was not what I expected to hear over the phone when catching up with a college friend the summer before my second year of medical school. Even more puzzling to me was the story of how she got her diagnosis. She relayed the saga of an intrauterine device placement gone wrong, infection-induced psychosis, and severe menstrual bleeding and pain. Following an extensive workup, she was diagnosed with polycystic ovarian syndrome (PCOS), recently renamed polyendocrine metabolic ovarian syndrome (PMOS), at age 25. Her recent experience was at the forefront of my mind a few weeks later when I was deep into the endocrine-reproduction block of medical school. It seemed unjust that a condition taught to us as common and treatable had caused my friend so much pain and worry while leaving her with a lifelong diagnosis.
The reality is that her experience is not unique. PMOS affects approximately 6 to 12 percent of women and costs the U.S. health care system $8 billion annually. Yet, hundreds of thousands of women remain undiagnosed each year, missing critical and timely intervention for possible infertility, metabolic syndrome, diabetes, cardiovascular disease, and obesity.
A review of electronic health records at Boston Medical Center between 2003 and 2015 found that out of 1,929 women who met the diagnostic criteria for PCOS (now PMOS), 730 (38 percent) had no physician diagnosis recorded. Even more alarmingly, the prevalence of missed cases was almost twice as high in women who were Black or African American, were on Medicaid or charity insurance, or were non-English speaking. Similar patterns emerged in a 2023 data analysis of the Coronary Artery Risk Development in Young Adults (CARDIA) Study. Women with unrecognized PMOS were more likely to experience food insecurity, highlighting how socioeconomic disadvantage can contribute to missed diagnoses.
Women concerned about their own health are being dismissed. And many are rightfully frustrated. A focus group study of women with PMOS conducted by the American College of Obstetricians and Gynecologists in 2024 found similar experiences of dismissal of symptoms, delayed diagnoses, and uncertainty regarding their health future among participants. Many cited social media as a source of information and a way to find a positive, relatable community. However, the accuracy of such information often created hesitancy about materials found or introduced disconnect when outside sources were brought to their physicians.
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This small but powerful study from ACOG was not alone in its findings. A qualitative study in Alberta, Canada sought to understand directly how the impacted women felt, gathering stories ranging from women who were not treated because their symptoms were dismissed “due to it being a woman-related problem” to some women given treatment only based on fertility and “not lifestyle management for preventative health.” From this study, only four out of 121 interviewed women reported adequate care. Furthermore, one participant shared a particularly striking quote describing her diagnosis as “hinder[ing] the want to lead a healthy life.”
As current medical students, change starts with us. Pushing for more education reform and mandated training of PMOS management during clinical years is only one of the ways to start bridging the gaps between undiagnosed women and the care they deserve. This could include integrating standardized PMOS curricula into OB/GYN and endocrinology rotations, improving instruction on diagnostic criteria, and emphasizing culturally competent care for women whose symptoms are often dismissed.
Beyond improving education, the recent transition from PCOS to PMOS reflects growing recognition that this disorder extends beyond fertility and ovarian function. Although the name change reflects a better understanding of the condition, many questions remain about how to best diagnose, treat, and support patients living with PMOS. As a result, the true prevalence of PMOS in the United States remains uncertain, although current estimates suggest that 5 to 6 million women are affected. Furthermore, $9.5 million was devoted to PMOS research in the NIH in 2022, comprising only approximately 0.02 percent of the total budget.
Further lacking is a standard framework for multidisciplinary and comprehensive care for women with PMOS. A model implemented by the National Institute for Research in Reproductive and Child Health (NIRRCH) in Mumbai, India demonstrated that approaching PMOS holistically through addressing menstrual, cosmetic, infertility, obesity, metabolic, and psychological concerns suggested earlier and more effective management of PMOS. If the U.S. could adopt a similar framework and insurance covered a more comprehensive scope of care for PMOS patients, perhaps women here could benefit from such revolutionary care measures.
Beyond medicine, PMOS remains underrecognized as a public health issue. Too often, it is still discussed only in the context of fertility despite its metabolic, cardiovascular, and psychological consequences. Organizations such as PCOS Challenges are helping shift that conversation, but broader awareness is still needed.
For medical students, this has direct implications for how we learn and how we will ultimately care for patients. If PMOS continues to be treated as a niche fertility issue, future physicians will remain underprepared to recognize it early, counsel patients appropriately, or manage its long-term complications.
As medical students, we are entering the field at a pivotal moment. We can continue to view PMOS as a narrow reproductive disorder, or we can recognize it for what it truly is: a chronic, multisystem condition that affects millions of women. The difference matters. It affects whether patients are heard, whether diagnoses are made, and whether treatment begins before years of preventable suffering have already occurred.
This essay is cited in the KevinMD record on women’s health.
Aislinn Jones is a medical student.
