PCOS Patients Feel Dismissed and Underserved: Study Suggests - Video

A new study published in F&S Reports sheds light on the challenges faced by individuals living with Polycystic Ovary Syndrome (PCOS), revealing that many feel ignored, misunderstood, and underserved by the healthcare system. The research emphasizes a need for more empathetic, patient-centered approaches to PCOS care.

PCOS is a common hormonal disorder affecting up to 1 in 10 individuals with ovaries.

The study was conducted by researchers from the Departments of Obstetrics and Gynecology and Psychiatry, who held virtual focus groups with 24 participants. These discussions focused on patient experiences with the diagnosis and treatment of PCOS. Across all groups, participants consistently reported feeling dismissed when they initially voiced concerns about symptoms often in adolescence. Many described waiting years for a formal diagnosis, leading to frustration and emotional distress.

“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 Dr. Phoutdavone “Noy” Phimphasone-Brady, co-senior author of the study.

Participants said the healthcare system often focused narrowly on weight loss and fertility, while they struggled more with daily symptoms and emotional impacts. “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 Dr. Kathryn McKenney, co-director of the PCOS Multi-Disciplinary Program and senior author of the study.

With little support, many turned to online resources for information. “This kind of self-navigation creates unnecessary stress,” added Phimphasone-Brady. “It also increases the risk of misinformation, which can further delay appropriate treatment.”

“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.

Reference: Gaps and opportunities in polycystic ovary syndrome care—a qualitative study, Zhang, Alexander Z. et al.F&S Reports, Volume 0, Issue 0.