New Perspectives on PCOS

As the incidence of polycystic ovary syndrome grows, so does an increased awareness.

Statistics show that nearly 10% of women have polycystic ovary syndrome (PCOS), making it one of the leading causes of infertility, and new research indicates that it seems to be on the rise. Three recent studies from The Journal of Clinical Endocrinology & Metabolism add to the evidence base of this “neglected, yet common” condition.

Although polycystic ovary syndrome (PCOS) is the most common endocrine disorder among reproductive-age women, the evidence base for diagnosis and treatment remains relatively weak for this “neglected” condition, according to the most recent international guideline.

Three new studies published in the Journal of Clinical Endocrinology & Metabolism have added to that evidence base, with one reporting a rise in incidence of the condition in the past two decades, a second tying disease phenotypes to particular co-morbidities, and a third confirming the increased risks of eating disorders among women with PCOS.

Increased Incidence

The first study, “Rising Incidence, Health Resource Utilization and Costs of Polycystic Ovary Syndrome in the United Kingdom,” by Berni, et al., examined data from U.K. health records and found that reported PCOS incidence increased “significantly” from 1.22 per 1,000 person years in 2004 to 1.77 in 2012 and 2.20 in 2019. Point prevalence increased from 1.02% in 2004 to 2.2% in 2012 and 3.5% in 2020, with significant differences by ethnicity. The highest rates occurred among those of Asian ethnicity. The researchers also reported that healthcare costs were significantly higher for patients with PCOS compared with matched controls.

The researchers noted that the reported prevalence of PCOS seems to vary in part due to diagnostic criteria. The Rotterdam criteria published in 2003 are less strict than the previous National Institutes of Health and Androgen-Excess-PCOS Society criteria.

“Without giving PCOS dedicated research resources the prevalence will only continue to increase; people affected will continue to suffer with few effective treatments; and families, communities, and societies will bear increased healthcare costs and financial burdens.” — Leanne M. Redman, MD, professor of reproductive endocrinology and women’s health, Pennington Biomedical Research Center, Baton Rouge, Louisiana

“The reasons for this rising incidence are subject to debate,” says Richard S. Legro, MD, chair of the Department of Obstetrics and Gynecology at Pennsylvania State College of Medicine. Legro chaired an Endocrine Society committee that published a PCOS guideline in 2013 and reviewed the three recent studies at the request of Endocrine News. “Broader diagnostic criteria probably increased the incidence, and there has also been greater public and medical awareness of the disorder. Nonetheless, as the authors note, the disorder is still likely underdiagnosed in the population.”

The 2023 international guideline for PCOS assessment and management offers the most recent diagnostic criteria, which the authors say build on the 2018 international guideline and the 2003 Rotterdam criteria. The 2023 guideline bases a PCOS diagnosis on the presence of at least two of three indicators: (1) clinical/biochemical hyperandrogenism, (2) ovulatory dysfunction, and (3) polycystic ovaries as assessed on ultrasound or by an anti-Müllerian hormone blood test.

Phenotypes Affect Sequelae

The second study, “Risk of Type 2 Diabetes, MASLD, and Cardiovascular Disease in People Living with Polycystic Ovary Syndrome,” by Henney et al., used U.K. Biobank data to examine the incidence of type 2 diabetes, metabolic dysfunction associated steatotic liver disease, cardiovascular disease (CVD), hormone-dependent cancers, and dementia between PCOS patients compared with controls matched by age and body mass index. The researchers found no differences between the groups for cancer and dementia, but PCOS patients had a higher incidence of diabetes, all-cause cardiovascular disease, and steatotic liver.  

In addition, the researchers examined multiorgan magnetic resonance imaging data of PCOS patients and compared the effects of normoandrogenic vs. hyperandrogenic phenotypes. They found that normoandrogenic PCOS patients had a greater incidence of all-cause CVD, whereas hyperandrogenic patients were more likely to have hepatic steatosis.  

The researchers conclude that “people with PCOS are at an increased risk of metabolic disease and CVD, with a potential divergence of risk according to PCOS phenotype. Hyperandrogenism may confer opposing metabolic and cardiovascular effects, with a potentially amplified risk of metabolic dysfunction associated steatotic liver disease despite a lower risk of CVD. These results suggest more precise phenotype classification may benefit ongoing risk stratification for patients with PCOS.”

“Our findings emphasize the importance of screening women with PCOS for eating disorders before clinicians share any lifestyle advice. The lifestyle modifications we often recommend for women with PCOS — including physical activity, healthy diet, and behavior modifications — could hinder the recovery process for eating disorders. Healthcare providers need to be vigilant about screening for eating disorders in this population.” —  Laura Cooney, MD, associate professor, University of Wisconsin, Madison, Wisconsin

Legro notes that this phenotypic classification could be “important for identifying women with PCOS at risk for these disorders. The diagnostic criteria for PCOS remain an expert-based opinion, not evidence-based, and linking specific phenotypes to long-term sequelae are important both for long-term management and the further development of evidence-based diagnostic criteria.”

Eating Disorders Linked to PCOS

The third study   — “Increased Prevalence of Binge Eating Disorder and Bulimia Nervosa in Women with Polycystic Ovary Syndrome: A Systematic Review and Meta-analysis” — reviewed and analyzed 20 cross-sectional studies in nine countries that was done in support of the 2023 international PCOS guideline.

The study shows that women with PCOS are at higher risk of eating disorders, including bulimia nervosa, binge-eating disorder,  and disordered eating, “This analysis is the first time we’ve been able to confirm this increased risk of specific eating disorders,” says the study’s lead author, Laura Cooney, MD, associate professor at the University of Wisconsin in Madison. “Many women with PCOS experience weight stigma, and that can be detrimental to mental health generally and contribute to disordered eating.”

“Our findings emphasize the importance of screening women with PCOS for eating disorders before clinicians share any lifestyle advice,” Cooney says. “The lifestyle modifications we often recommend for women with PCOS — including physical activity, healthy diet, and behavior modifications — could hinder the recovery process for eating disorders. Healthcare providers need to be vigilant about screening for eating disorders in this population.”

A Need for More Research

All three studies and the 2023 international guideline emphasize the need for more research. The guideline notes that “the evidence has generally improved over the past five years [since the 2018 international guideline] but remains of low to moderate quality, requiring significant research investment into this neglected, yet common condition.”

Berni et al. write: “Our data emphasize the importance of recognizing PCOS as a public health priority and underscore the need for greater investment and research funding for this historically under-resourced disorder. Although our data confirm a rise in prevalence of a recorded diagnosis of PCOS, suggesting a possible improvement in diagnostic awareness over time, the true prevalence is likely to be much higher. Improved education is therefore still needed to improve the gaps that are apparent in physician knowledge.”

“The reasons for this rising incidence are subject to debate. Broader diagnostic criteria probably increased the incidence, and there has also been greater public and medical awareness of the disorder. Nonetheless, as the authors note, the disorder is still likely underdiagnosed in the population.”  — Richard S. Legro, MD, chair, Department of Obstetrics and Gynecology, Pennsylvania State College of Medicine, Hershey, Pennsylvania

“These three articles underscore the dire need for more research funding to understand identification, prevention, and treatment of polycystic ovary syndrome,” agrees Leanne M. Redman, MD, professor of reproductive endocrinology and women’s health at Pennington Biomedical Research Center, part of the Louisiana State University System, who was a contributor to the international guideline. “Without giving PCOS dedicated research resources the prevalence will only continue to increase; people affected will continue to suffer with few effective treatments; and families, communities, and societies will bear increased healthcare costs and financial burdens.”

Seaborg is a freelance writer based in Charlottesville, Va. In the August ENDO 2024 highlights issue, he wrote about “European Society of Endocrinology and Endocrine Society Joint Clinical Guideline: Diagnosis and Therapy of Glucocorticoid-induced Adrenal Insufficiency,” the first new practice guideline to be co-authored by both Endocrine Society and European Society of Endocrinology.