Raising Awareness and Support for Renaming Polycystic Ovary Syndrome (PCOS)

Polycystic ovary syndrome (PCOS) affects approximately one in eight women worldwide and is often misunderstood or misrepresented, impacting diagnosis, treatment, and research. A recent study led by Monash University highlights significant progress in increasing awareness about the broader health impacts of PCOS, extending beyond its traditional association with ovarian cysts and reproductive health.

This international research involved surveys of over 7,700 patients and healthcare professionals across six continents, conducted in 2015 and 2023, complemented by face-to-face workshops. The findings reveal improved understanding of PCOS’s diverse features, including metabolic, cardiovascular, skin, and psychological implications, partly due to the dissemination of updated clinical guidelines and patient resources such as the ASKPCOS app.

A major focus of the study is the strong support—76% of healthcare providers and 86% of patients—for renaming the condition. The current name, "polycystic ovary syndrome," often misleads by emphasizing ovarian cysts, which are not true cysts but follicles that have stopped developing. This misnomer contributes to misconceptions, delayed diagnoses, and inadequate care. Many stakeholders favor alternative names that reflect the endocrine and metabolic nature of the disorder, such as "endocrine-responsive disorder" or "metabolic reproductive disorder."

Initiatives led by Professor Helena Teede and collaborating organizations aim to establish a new, more accurate name through a multi-step global consensus process involving professional societies and patient advocacy groups. The goal is to enhance awareness, early diagnosis, and treatment, ultimately improving health outcomes and supporting research funding.

Patients like Lorna Berry, who has PCOS, welcome the proposed change, viewing it as a step towards respect, clarity, and better management of the condition. Her experience underscores the need for ongoing education and holistic, lifelong care.

This movement reflects a broader trend towards recognizing PCOS as a complex, multisystem disorder rather than a solely reproductive issue. The international effort emphasizes the importance of culturally sensitive naming and communication strategies to ensure inclusiveness and effectiveness.

For more information, healthcare professionals and patients are encouraged to participate in the ongoing survey to help shape the new name: PCOS new name survey.

source: https://medicalxpress.com/news/2025-05-polycystic-ovary-syndrome-awareness-significantly.html