A Patient Battle for Recognition

A recent study unveiled a troubling reality for those living with polycystic ovary syndrome (PCOS): many patients feel overlooked and dismissed by healthcare providers. Published in F&S Reports, the findings highlight a pervasive sense of frustration among patients who struggle to have their voices heard.

Years of Being Ignored

Across focus groups, participants expressed feelings of being dismissed, particularly during their formative years. Many reported enduring long waits—sometimes up to 15 years—before receiving a diagnosis. This journey often left them feeling isolated and blamed for their symptoms like irregular periods, acne, and hair loss.

"Patients consistently shared how their symptoms were minimized by clinicians, leading to delays in both diagnosis and effective treatment," said Noy Phimphasone-Brady, PhD, a key author of the study.

Methodology: Listening to Patients

To uncover these issues, researchers conducted in-depth focus group sessions with individuals diagnosed with PCOS or suspected of having it. These discussions, held over Zoom, provided a space for patients to share their healthcare experiences, revealing critical gaps in care.

Clinician Dismissal: A Common Theme

Among the 24 participants, a prominent theme was the feeling of dismissal by healthcare providers. Clinicians often disregarded symptoms, attributing them to normal changes or even body type, which heightened feelings of frustration. Many patients had to consult multiple providers before receiving a diagnosis, with imaging studies sometimes hastening the process.

Misalignment of Goals

Another concern raised was the misalignment between patient needs and clinician management approaches. Patients found themselves caught in conversations focusing on fertility and weight loss, while they were more concerned about managing other symptoms. This focus often stemmed from a lack of proper education about long-term birth control options, sometimes leading to unwanted side effects.

The Power of Self-Advocacy

In light of these challenges, many participants turned to self-advocacy to truthfully inform their healthcare encounters. Faced with provider dismissal, patients resorted to researching their symptoms independently, utilizing social media platforms as sources of education, which resulted in complex interactions when presenting findings to their doctors.

A Call for Change: Patient-Centered Care

The study’s insights reveal an alarming need for improved care for PCOS patients. Advocates stress that a patient-centered approach is necessary—one that actively listens to the concerns of patients and prioritizes their physical and emotional health.

"Individuals with PCOS deserve comprehensive, personalized care that truly acknowledges their experiences," emphasizes Kathryn McKenney, MD, another co-author of the study. The message is clear: healthcare providers need to start listening.