After hearing from over 22,000 people over 11 years, polycystic ovarian syndrome (PCOS), a condition that affects one in eight women, has been renamed polyendocrine metabolic ovarian syndrome (PMOS), according to a recent announcement at the European Congress of Endocrinology in Prague and publication in The Lancet.

 

The former name focused attention on the ovaries as the sole organs involved in the condition. In reality, PMOS causes an imbalance of hormones that impacts metabolic, mental, skin and reproductive health and can boost one’s risk for diabetes and heart disease. The new name better reflects the multisystem impacts of the condition and aims to improve diagnosis and treatment for women affected by it.

 

“There was a lot of background concern about changing the name of the condition because it’s been so neglected, so poorly diagnosed, so poorly researched and funded for so long that, quite rightly, patients and consumers were pretty up in arms about the fact that they just wanted to get this right,” said endocrinologist Helena Teede, PhD, the director of Melbourne’s Monash Center for Health Research and Implementation, who spearheaded the effort to rename the condition.

 

The Cleveland Clinic attributed PMOS symptoms—including irregular periods, abnormal hair growth, acne, obesity, darkening of the skin, cysts, skin tags, thinning hair and infertility—to insulin resistance, high androgen levels and chronic inflammation. High levels of insulin increase the production of androgens, like testosterone, while androgens regulate the development, maturation and selection of ovarian follicles (fluid-filled sacs containing immature eggs). It was originally thought that high androgen levels gave rise to small follicle cysts on the ovaries, which is how the disorder originally got its name. However, a recent paper in JAMA Internal Medicine, from the same Australian researchers leading the effort to rename PCOS, found no increase in abnormal ovarian cysts. The paper concluded that PMOS could be diagnosed based on the physical symptoms associated with the condition.

 

Women with PMOS have high androgen levels, resulting in irregular menstruation and unpredictable ovulation. Androgen receptors in the skin, hair follicles, muscle, brain and adipose tissue help regulate libido, mood, energy and metabolic processes throughout the body. 

 

PMOS affects 170 million worldwide, but it more often and severely affects Black and Latina women, who experience higher morbidity and mortality due to cardiovascular disease and diabetes, greater hyperinsulinemia (excess insulin in the blood) and insulin resistance, higher rates of hirsutism (excess hair growth) and less likelihood of getting pregnant, according to a 2017 study published in the American Journal of Obstetrics and Gynecology.

 

Before renaming the condition, researchers surveyed 22,068 patients and health professionals globally. The survey included an outline of the mandate for a name change (principles, approaches and terminology) and combinations for a new name. The researchers prioritized agreement among patients and health professionals on the new name.

 

“For that reason, we spent a great deal of time on this, both in the surveys and also in the workshops. The terms that were agreed on were polyendocrine, metabolic and ovarian. The next step was to bring them together in a new name,” said Teede.

 

The term PMOS will be implemented over the course of the next three years via public and academic dissemination, coordinated global communication, integration into electronic health records, alignment among policy agencies, research funders and journals, and formal engagement of international classification bodies, such as the World Health Organization. The next update to international guidelines, set to be published in 2028, will include the new name.

 

“The agreed principles of the new name included patient benefit, scientific accuracy, ease of communication, avoidance of stigma, cultural appropriateness and accompanying implementation,” Teede said. “This change was driven with and for those affected by the condition, and we are proud to have arrived at a new name that finally accurately reflects the complexity of the condition.”