Individuals living with Polycystic Ovary Syndrome (PCOS) often feel dismissed, misunderstood and underserved by the healthcare system.
This is according to a study published in F&S Reports.
“PCOS is a common hormone-related condition that affects up to 1 in 10 individuals with ovaries. It can cause a range of symptoms including irregular periods, acne, unwanted facial hair, weight gain and fertility issues,” said Kathryn McKenney, MD, co-director of the PCOS Multi-Disciplinary Program and assistant professor in the Department of Obstetrics and Gynecology and senior author of the study. “The condition is also linked to serious long-term health risks such as diabetes, cardiovascular disease and mental health challenges.”
The study involved researchers from the Departments of Obstetrics and Gynecology and Psychiatry and drew on virtual focus groups with 24 participants. It explored patient experiences with diagnosis and care. Across all focus groups, participants described feeling dismissed or ignored when first raising concerns about their symptoms, often during adolescence. Many reported that it took years to receive a diagnosis. By then, they felt frustrated, isolated and blamed for their condition.
“Patients told us their concerns, such as missed periods, acne or hair loss, were frequently minimized. They often felt that their voices were not heard, and that led to a delay in both diagnosis and effective treatment,” said Phoutdavone “Noy” Phimphasone-Brady, PhD, an assistant professor in the Department of Psychiatry and one of the study’s senior authors.
Participants also noted that healthcare providers primarily emphasized two areas, weight loss and future fertility. However, most patients said they were more concerned with managing daily symptoms, addressing emotional and psychological impacts and understanding the condition itself.
“One woman in the study said her doctor seemed to care only about her fertility down the line, when, as a teenager, what she really needed help with was anxiety and persistent acne,” said McKenney.
Due to a lack of clear guidance, many patients told researchers they turned to social media and websites to educate themselves. Several described having to advocate for their own care, researching symptoms, requesting tests and even bringing information to appointments to be taken seriously.
“This kind of self-navigation creates unnecessary stress,” said Phimphasone-Brady. “It also increases the risk of misinformation, which can further delay appropriate treatment.”
“This study reflects the dedication of a collaborative team and the honesty of participants who shared their experiences,” said Alex Zhang, who led the research as a medical student at CU Anschutz. “We hope this work leads to more inclusive and patient-centered care.”
The study’s authors call for a more comprehensive, empathetic approach to PCOS care, one that validates patient experiences, addresses the full spectrum of symptoms and offers accessible, evidence-based education.
“Addressing PCOS requires more than a narrow focus on fertility or generalized weight loss recommendations. Individuals with PCOS deserve comprehensive, personalized care that attends to both their physical and emotional well-being. That care must begin with truly listening to their experiences,” said McKenney,
