PCOS patients report feeling dismissed by health care providers

PCOS patients report feeling dismissed by health care providers | Image Credit: © Gatot - © Gatot - stock.adobe.com.

Patients with polycystic ovary syndrome (PCOS) often feel dismissed, misunderstood, and underserved by the health care system, according to a study published in F&S Reports on July 7, 2025.¹

Feelings of being dismissed or ignored were reported by patients in all focus groups when discussing their symptoms. These experiences often occurred during adolescence, with many patients not receiving a diagnosis for years. During this period, they would often feel frustrated, isolated, and blamed for their condition.¹

“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 Noy Phimphasone-Brady, PhD, senior study author and assistant professor at the University of Colorado Anschutz Medical Campus.¹

Focus group methodology

The focus group analysis was conducted to evaluate perceived clinical gaps and experiences with PCOS care.² Participants were aged at least 18 years, premenopausal, diagnosed with PCOS or suspected PCOS, and receiving care through a specific Colorado hospital system.

A literature review and investigators’ clinical experience were used to develop a guide for assessing patient experiences with PCOS care. Categories of questions included obtaining a diagnosis and living with PCOS, PCOS care experience, access to and satisfaction with PCOS care, and suggestions for improving PCOS care.²

Consent, participant demographics, eligibility, and scheduling were obtained using Research Electronic Data Capture. Focus groups were comprised of at least 3 participants with the same availability and occurred for 60 to 90 minutes over Zoom.²

Investigators consolidated transcript summaries in a spreadsheet with each tab having a domain name. During virtual meetings, the analysis team thematically evaluated each domain, after which the team met to identify major themes.²

Dismissal by clinicians

There were 24 participants aged a mean 29 years included in the final analysis, 88% of whom were White, 33% Hispanic, 58% partnered, and 75% with commercial insurance. Among these participants, a theme of clinician dismissal was reported, increasing distress and frustration because of symptoms such as irregular menses and dermatologic symptoms.²

Dismissal caused by body size was reported by some participants, such as leaner patients being told PCOS did not fit their body type. There were also cases of clinicians attributing symptom onset to normal pubertal changes or individual body or mental health, leading patients to feel clinicians were hesitant to work up their symptoms.²

The duration between symptom onset and PCOS diagnosis ranged from 2 weeks to 15 years, with many patients needing to see more than 1 provider before being diagnosed. However, imaging was linked to expedited diagnosis.²

Misalignment concerns

Poor alignment between clinicians’ management approaches and participants’ needs and goals was reported as the second theme. This included clinician focus on fertility and weight when patients were more concerned about managing another symptom.²

Clinicians also sometimes provided inaccurate information about future fertility potential, leading to unintended consequences. Additionally, participants reported feeling the recommendation for long-term birth control use was made without proper education or rationale, with some individuals experiencing adverse side effects from birth control.²

Misalignment issues pertaining to body weight included providers approaching weight as a one-dimensional problem with weight loss as the sole solution. This led participants to feel weight loss was being suggested without individual context or insight about prior weight loss attempts.²

An increase in self-advocacy

The final theme identified was participants seeking answers about PCOS through self-advocacy both during and outside health care encounters. A pressure to self-advocate was caused by provider dismissal and goal misalignment, leading participants to research symptoms and treatment outside of a health care setting.²

When bringing this information to their providers, participants often experienced challenging interpersonal dynamics. Despite the varying quality of these resources, participants more frequently sought PCOS education through social media platforms.²

According to investigators, these themes highlight a significant need to improve PCOS care at all levels. A patient-centered approach was suggested to obtain concerns from patients and provide comprehensive education.²

“Individuals with PCOS deserve comprehensive, personalized care that attends to both their physical and emotional well-being,” said said Kathryn McKenney, MD, senior study author and co-director of the PCOS Multi-Disciplinary Program.¹ “That care must begin with truly listening to their experiences.”

References

1. Polycystic ovary syndrome patients say they feel dismissed and misunderstood, according to new study. University of Colorado Anschutz Medical Campus. July 7, 2025. Accessed August 25, 2025. https://www.eurekalert.org/news-releases/1090222.
2. Zhang AZ, Sehrt M, Ley SA, Ross KV, Phimphasone-Brady P, McKenney KM. Gaps and opportunities in polycystic ovary syndrome care—a qualitative study. F&S Reports. 2025. doi:10.1016/j.xfre.2025.05.011