News | Global research initiative seeks to rename polycystic ovary syndrome to improve diagnosis, treatment, and awareness
An international study led by Monash University and published in eClinicalMedicine emphasizes the urgent need to rename Polycystic Ovary Syndrome (PCOS). Involving 7,708 patients and healthcare professionals across six continents, it revealed widespread misunderstanding of the current name and strong agreement on changing it, with the aim of improving global understanding and effective treatment of this common but complex multisystem disorder.
PCOS affects about one in eight women of reproductive age worldwide. Despite “ovary” in its name, researchers say the term greatly understates its broad systemic effects. PCOS affects not only the reproductive system but is associated with metabolic abnormalities such as weight gain, type 2 diabetes, and cardiovascular disease; endocrine symptoms such as acne and excessive hair growth; mental health concerns such as depression and anxiety; and risks including pregnancy complications and endometrial cancer. These symptoms and risks are often worsened by weight gain.
Led by the Monash Centre for Health Research and Implementation (MCHRI), the study included global online surveys and in-person workshops in 2015 and 2023. It systematically assessed problems with the PCOS name, knowledge gaps, the advantages and disadvantages of renaming it, and possible alternatives.
Professor Helena Teede, lead author, director of MCHRI at Monash University, head of the National Centre of Research Excellence in Women’s Health in Reproductive Life (CRE-WHiRL), and an endocrinologist at Monash Health, said: “PCOS is the most common endocrine disorder among women of reproductive age, yet its name does not accurately convey its complexity or whole-body health effects. ‘Polycystic ovaries’ focuses on a misleading feature—what appear to be cysts are actually arrested follicles—and ignores broader metabolic, dermatological, and psychological manifestations, contributing to delayed diagnosis and missing information.”
Awareness of the multisystem clinical manifestations of PCOS increased significantly worldwide from 2015 to 2023. This was closely linked to the two Monash-led international PCOS guidelines published in 2018 and 2023, widespread use of the ASKPCOS patient-education app, and active participation by patient advocacy groups.
Up to 86% of patients and 76% of healthcare professionals supported renaming PCOS. Supporters identified potential benefits at rates as high as 90%, while fewer than 27% saw clear disadvantages. Alternative names incorporating “endocrine” and “metabolic” received the most support. A global, multistep consensus process has begun with broad participation from patients and professional societies.
Co-author Dr. Mahnaz Bahri Khomami of Monash University said: “The current name readily causes misunderstanding. Our goal is to move PCOS beyond the label of ‘only a gynecological disorder’ and promote full recognition of its complexity among clinicians, the public, and patients. Renaming may support earlier intervention, evidence-based management, research funding, and multidisciplinary care.”
PCOS patient and international naming working-group member Lorna Berry added: “For years, we have experienced frustration while seeking an accurate diagnosis. Even after diagnosis, misinformation about PCOS remains widespread. The name is medically outdated and emotionally disrespectful. Renaming validates patients’ experiences and is a key step toward higher-quality care.”
The study was conducted by experts from Monash University, Monash Health, the Polycystic Ovary Syndrome Association of Australia (POSAA), UK patient organization Verity, Victoria University of Wellington in New Zealand, the University of Pennsylvania in the US, Erasmus University Medical Center in the Netherlands, the University of Oulu in Finland, UNSW Sydney, and the University of Adelaide.
News | Global research initiative seeks to rename polycystic ovary syndrome to improve diagnosis, treatment, and awareness
News | Global research initiative seeks to rename polycystic ovary syndrome to improve diagnosis, treatment, and awareness
An international study led by Monash University and published in eClinicalMedicine emphasizes the urgent need to rename Polycystic Ovary Syndrome (PCOS). Involving 7,708 patients and healthcare professionals across six continents, it revealed widespread misunderstanding of the current name and strong agreement on changing it, with the aim of improving global understanding and effective treatment of this common but complex multisystem disorder.
PCOS affects about one in eight women of reproductive age worldwide. Despite “ovary” in its name, researchers say the term greatly understates its broad systemic effects. PCOS affects not only the reproductive system but is associated with metabolic abnormalities such as weight gain, type 2 diabetes, and cardiovascular disease; endocrine symptoms such as acne and excessive hair growth; mental health concerns such as depression and anxiety; and risks including pregnancy complications and endometrial cancer. These symptoms and risks are often worsened by weight gain.
Led by the Monash Centre for Health Research and Implementation (MCHRI), the study included global online surveys and in-person workshops in 2015 and 2023. It systematically assessed problems with the PCOS name, knowledge gaps, the advantages and disadvantages of renaming it, and possible alternatives.
Professor Helena Teede, lead author, director of MCHRI at Monash University, head of the National Centre of Research Excellence in Women’s Health in Reproductive Life (CRE-WHiRL), and an endocrinologist at Monash Health, said: “PCOS is the most common endocrine disorder among women of reproductive age, yet its name does not accurately convey its complexity or whole-body health effects. ‘Polycystic ovaries’ focuses on a misleading feature—what appear to be cysts are actually arrested follicles—and ignores broader metabolic, dermatological, and psychological manifestations, contributing to delayed diagnosis and missing information.”
Awareness of the multisystem clinical manifestations of PCOS increased significantly worldwide from 2015 to 2023. This was closely linked to the two Monash-led international PCOS guidelines published in 2018 and 2023, widespread use of the ASKPCOS patient-education app, and active participation by patient advocacy groups.
Up to 86% of patients and 76% of healthcare professionals supported renaming PCOS. Supporters identified potential benefits at rates as high as 90%, while fewer than 27% saw clear disadvantages. Alternative names incorporating “endocrine” and “metabolic” received the most support. A global, multistep consensus process has begun with broad participation from patients and professional societies.
Co-author Dr. Mahnaz Bahri Khomami of Monash University said: “The current name readily causes misunderstanding. Our goal is to move PCOS beyond the label of ‘only a gynecological disorder’ and promote full recognition of its complexity among clinicians, the public, and patients. Renaming may support earlier intervention, evidence-based management, research funding, and multidisciplinary care.”
PCOS patient and international naming working-group member Lorna Berry added: “For years, we have experienced frustration while seeking an accurate diagnosis. Even after diagnosis, misinformation about PCOS remains widespread. The name is medically outdated and emotionally disrespectful. Renaming validates patients’ experiences and is a key step toward higher-quality care.”
The study was conducted by experts from Monash University, Monash Health, the Polycystic Ovary Syndrome Association of Australia (POSAA), UK patient organization Verity, Victoria University of Wellington in New Zealand, the University of Pennsylvania in the US, Erasmus University Medical Center in the Netherlands, the University of Oulu in Finland, UNSW Sydney, and the University of Adelaide.
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