PCOS patients often feel dismissed, misunderstood and underserved by the healthcare system

PCOS patients often feel dismissed, misunderstood and underserved by the healthcare system

A new study from the University of Colorado Anschutz Medical Campus shows that individuals living with polycystic ovary syndrome (PCOS) are often dismissed, misunderstood and underserved by the healthcare system.

The study, published today inF&S reports.

"PCOS is a common hormone-related disorder that affects up to 1 in 10 people with ovaries. It can result in a range of symptoms, including irregular periods, acne, unwanted facial hair, weight gain and fertility problems," said Kathryn McKenney, MD, co-director of the PCOS Multi-Ise Programs and assistant professor of the department and assistant professor of the department and assistant study assistant professor. “The condition is also associated with serious long-term health risks such as diabetes, cardiovascular disease and mental health problems.”

The study included researchers from the departments of obstetrics and gynecology and psychiatry and relied on virtual focus groups with 24 participants. It examined patient experiences of diagnosis and care. Participants in all focus groups described themselves as dismissing or ignoring concerns about their symptoms for the first time in adolescence. Many reported that it took years to receive a diagnosis. Until then, they felt frustrated, isolated and responsible for their condition.

Patients told us that their concerns, such as absenteeism, acne or hair loss, were often minimized. They often felt that their voices were not heard and this resulted in a delay in both diagnosis and effective treatment. “

Phoutdavone “noy” Phimphason-Brady, PhD, 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, combating the emotional and psychological impact, and understanding the condition itself.

"One woman in the study said her doctor only seemed to care about her fertility when she really needed help and had persistent acne as a teenager," McKenney said.

Because of the lack of clear guidance, many patients told researchers they turned to social media and websites to educate themselves. Some described having to advocate for their own care, investigate symptoms, request testing and even bring information to appointments to be taken seriously.

“This kind of self-navigation creates unnecessary stress,” Phimphason-Brady said. “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 the 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 integrative and patient-centered care.”

The study authors call for a more comprehensive, compassionate approach to PCOS care that validates patient experiences, addresses the full spectrum of symptoms, and provides accessible, evidence-based education.

"Treating PCOS requires more than just a narrow focus on fertility or generalized weight loss recommendations. Individuals with PCOS deserve comprehensive, personalized care that addresses both their physical and emotional well-being. This care must begin with truly listening to their experiences," said McKenney, McKenney,.

The study is part of a broader initiative to improve multidisciplinary care for PCOS, supported by the Departments of Obstetrics and Gynecology and Psychiatry at the University of Colorado Anschutz Medical Campus and informed by patient advisory groups.

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