Women with polycystic ovary syndrome (PCOS) report experiencing poor health and quality of life into their late forties, including mental health issues such as anxiety and depression that continue beyond their fertile age.

PCOS is a common yet underdiagnosed hormonal condition that may affect almost one-in-five women of reproductive age. Women with PCOS produce higher-than-normal levels of male hormones, which can make it difficult to get pregnant and result in missed menstrual cycles and other symptoms such as hair loss. As the name suggests, some women may also experience cysts on their ovaries. It is the leading cause of both infertility and type 2 diabetes and is mostly characterized as a reproductive and metabolic disorder, but its effects extend beyond fertility-related issues.

Few studies focus on the impacts of PCOS beyond reproductive years. To begin understanding the long-term effects of the condition, researchers analyzed the quality of life questionnaire known as 15D from more than 4,500 women at the age of 31 and again in 2013 when they were 46. Respondents were asked to answer questions on life satisfaction and health status, including those on weight, height, and menstrual cycle. Though 15D is well replicated and standardized, there remain limitations and biases with self-reported data.

"Most PCOS studies focus on women during reproductive age, but symptoms like mental health issues and excess hair growth continue into the late forties," said the study's principal investigator Terhi Piltonen, M.D., Ph.D. of the University of Oulu in Finland, in a statement. "Our study focuses on this population and shows that women with PCOS have lower life satisfaction and poorer health up to their late reproductive years."

Compared with women who do not have PCOS, women with the condition report having a poorer quality of life and health comparable to other women with chronic conditions like asthma, migraines, rheumatoid arthritis, and depression, even after adjusting for socioeconomic status and health characteristics. The researchers note that mental distress is the strongest contributing factor to poor quality of life and propose it is likely the result of physical health issues that result from the condition, esthetic concerns like obesity and acne, and psychological issues like depression, anxiety, and disordered eating.

It is unknown what causes PCOS, though there has been a link drawn between hormone imbalance in the womb and the disorder, particularly prenatal exposure to a growth factor called anti-Müllerian hormone. Previous research suggests that at least half of women with PCOS may have rare variants of a common gene involved in hormone disorder, while a 2018 study from the University of Cambridge’s Autism Research Centre found that women with the condition are more likely to have children with autism spectrum disorder and are more likely to be diagnosed with autism themselves. Overall, the findings highlight a need for a deeper understanding of PCOS and its long-term effects.

"More interventions are needed to improve the quality of life for women with PCOS who are in their late thirties and forties. These women should be screened regularly for mental health issues and treated for other distressing symptoms like excess hair growth," Piltonen said.

Symptoms and worries of women with PCOS should be treated effectively through a multidisciplinary approach, the researchers add. Most importantly, further research is needed to investigate and develop more effective means for improving quality of life, conclude the authors in the Endocrine Society's Journal of Clinical Endocrinology & Metabolism.