New International Guideline to improve the health of women with polycystic ovary syndrome

A Te Herenga Waka—Victoria University of Wellington researcher was one of the international experts who developed a guideline to improve the lives of women with polycystic ovary syndrome (PCOS).

PCOS is a neglected, underdiagnosed and under-researched women’s health condition that affects up to 12 per cent of women. It is often misclassified as a reproductive disorder, despite its far-reaching implications for metabolic, psychological, and pregnancy health.

The 2023 International PCOS Guideline, and AskPCOS Patient App led by Professor Helena Teede from the Monash Centre for Health Research and Implementation (MCHRI), Monash University, was released last month in four international journals—Fertility and Sterility, Human Reproduction, Journal of Endocrinology and Metabolism, and the European Journal of Endocrinology.

Dr Melanie Gibson, from Te Tātai Hauora o Hine—National Centre for Women’s Health Research Aotearoa, was on the guideline development group responsible for the recommendations relating to psychological features of PCOS and models of care for PCOS.

Dr Gibson has conducted internationally influential research on the topic and says she has long been passionate about improving access to timely, high-quality PCOS healthcare.  

“This guideline is unique because women with PCOS were involved in each stage of development, meaning it is designed not only for healthcare providers, but also for people with PCOS.  

It is designed to be practically useful and includes an extensive range of free resources for people with PCOS and healthcare providers—we hope this raises awareness and accurate understanding of PCOS among both clinicians and those affected.”

Dr Gibson was instrumental in the development of two of the free resources—the AskPCOS App, which has over 45,000 users in 193 countries, and the PCOS Question Prompt List.  

The evidence-based Guideline includes recommendations for diagnosis, lifestyle, well-being, fertility and treatment, as well as improved care and support. It aims to address the priority needs of those with PCOS and is supported by significant freely available resources for women and their healthcare providers, to optimise health outcomes.

Significant changes include revised diagnostic criteria involving hormone tests instead of ultrasound, and recognising features beyond reproductive health to weight, diabetes, heart disease, and mental health. It also addresses the need for new approaches to care, personalised healthcare experiences, evidence-based therapies, and optimised pregnancy care.

Dr Gibson says there is a dearth of research on the matter in Aotearoa New Zealand.

“The quality of PCOS care, and lived experiences of PCOS in Aotearoa New Zealand, are real unknowns.”

People with PCOS in Aotearoa deserve to have their experiences recognised, their concerns addressed, and their wellbeing prioritised.”

PCOS is also the leading cause of infertility in women. In the US alone, the estimated associated healthcare costs exceed $8 billion USD annually.

Monash University’s Professor Helena Teede, a leading global academic in PCOS and the driving force behind the new Guideline, said it highlighted priority areas such as higher weight gain, diabetes, heart disease risk, and effective treatments—including for infertility.  

“The Guideline highlights that understanding of the unique challenges facing those with PCOS must be addressed at all levels, so that women and girls can have the healthcare and outcomes they deserve,” says Professor Teede.  

“The opportunity for reach and impact to address these challenges is unprecedented, including in research, education, clinical practice, healthcare, and policy.

“The Guideline busts myths around higher weight and lifestyle and seeks to support those with PCOS and reduce stigma.  

“The focus is often on ineffective individual behavioural solutions, further impacting health and fertility. Limited access to effective therapies and fertility services leaves women with poorer health outcomes.”

The expanded and updated 2023 International PCOS Guideline is based on the best available evidence, clinical expertise, consumer preferences, and includes 254 recommendations and practice points to promote consistent, evidence-based care to improve women’s health. It builds on the 2018 Guideline, already used by health professionals and those with PCOS in 196 countries.  

The new Guideline aims to deliver timely diagnosis, accessible information, education, support, and optimal models of care. It also aims to enhance healthcare professional education, awareness, and support, while fostering partnerships and shared decision-making with those affected by PCOS globally.    

Professor Teede engaged Australian and global expertise, including consultation with more than 100 PCOS clinicians, researchers and lived experience experts, including 39 national and international societies in over 71 countries in six continents.  

Lorna’s story  

Lorna Berry, who has PCOS, was a lived experience expert on the Guideline and has shared her journey. She highlights the challenges faced in obtaining a diagnosis and reliable information, which greatly impacted her wellbeing, mental health, and fertility options.  

Lorna firmly believes that no woman should go undiagnosed and unsupported.

“Living with PCOS is challenging enough, but the struggle to find reliable information feels like an uphill battle,” she said.

“It’s disheartening when every corner you turn, there’s someone trying to sell a miracle cure.  

“All I want is trustworthy information that deals with my concerns and answers my questions. It just adds to the frustration and sense of hopelessness that can go with having PCOS.”

As a teenager, Lorna struggled with fluctuating weight, despite a healthy lifestyle, and was told by her doctor to diet. In her 20s, Lorna knew something wasn’t quite right, and it took her years to conceive her first child.

“I fought for my PCOS diagnosis. It affected all aspects of my life, family, fertility, wellbeing, and lifestyle. Empowering women so they can advocate and educate doctors and other health professionals is of utmost importance. We need to make sure that the next generation doesn’t go undiagnosed and unsupported.”

This work is funded by the National Health and Medical Research Council (NHMRC) Centre of Research Excellence in Centre for Research Excellence in Women’s Health in Reproductive Life (CRE WHiRL), and the Medical Research Future Fund. The Guideline was co-founded by the following partner organisations:

  • American Society for Reproductive Medicine
  • Endocrine Society
  • Society of Endocrinology
  • European Society of Human Reproduction and Embryology.

We also acknowledge the input of 34 other collaborating organisations and consumer groups internationally. A list of collaborators can be found here.