Polyendocrine Metabolic Ovarian Syndrome: A New Era

Polyendocrine Metabolic Ovarian Syndrome (PMOS) is the new term for what was once called Polycystic Ovary Syndrome (PCOS), affecting around 1 in 8 women globally, which translates to over 170 million individuals.

A collaborative effort involving more than 50 patient and professional organizations, including the Endocrine Society, led to the development of this new name.

PMOS is marked by hormonal fluctuations that influence weight, metabolic and mental health, skin conditions, and reproductive functions.

Previous naming may have oversimplified this complex, long-term hormonal disorder, focusing too heavily on ‘cysts’ and ovaries. This misrepresentation often resulted in overlooked diagnoses and insufficient treatments.

Professor Helena Teede, affiliated with Monash University and an endocrinologist at Monash Health, spearheaded the renaming initiative. She has dedicated decades to researching the condition and observing its effects on patients.

“What we’ve come to realize is that there’s no actual increase in abnormal cysts in these ovaries, and the myriad features of the condition are often undervalued,” Teede noted, pointing out her affiliation with the Endocrine Society.

She shared her sorrow over the slow diagnoses, lack of understanding, and inadequate care given to those suffering from this often-overlooked condition.

“While existing international guidelines have improved awareness and care, changing the name was a crucial next step toward better recognition and managing the long-term consequences of this illness,” she said.

This renaming process, detailed in a recent publication in The Lancet, took 14 years and involved global collaboration among experts and people with personal experiences of the condition.

Teede worked alongside other professionals, including Professor Terhi Piltonen, the president of the International Androgen Excess and Polycystic Ovary Syndrome Society, and others from various organizations and countries.

According to research from the same group of experts, there’s further evidence underscoring the lack of increase in ovarian cysts, reinforcing the name change’s necessity.

An extensive patient-focused survey garnered over 22,000 responses and featured several international workshops with multidisciplinary health professionals and patients.

The name change will be fully integrated during a three-year transition, supported by a widespread international education campaign directed at healthcare professionals, governments, and researchers. The new terminology will appear in the updated 2028 International Guideline.

Teede described this initiative as the largest undertaken to rename a medical condition.

“The principles we agreed upon for the new name included benefits for patients, scientific accuracy, clarity for communication, avoiding any stigma, and cultural sensitivity,” she explained. “This change is rooted in the experiences of those affected, and we are pleased to have a name that genuinely reflects the condition’s complexity. This represents a significant milestone for necessary advancements in clinical practice and research globally.”

Piltonen emphasized the cultural considerations that played a role in the renaming process.

“It was vital to ensure the new name was scientifically valid while being sensitive to various cultural contexts to prevent any reproductive terms that might carry stigma or harm women in different societies,” she commented, highlighting the importance of informed consultations in achieving the correct outcome.

Lorna Berry, an Australian who has PMOS and significantly contributed to the renaming effort, expressed optimism about the future.

“This change signifies accountability and progress. It’s about my daughters, their daughters, and the countless women who will come after. We need clarity, understanding, and fair healthcare from the outset,” she stated.

Rachel Morman, Chair of Verity (PCOS UK), noted that the previous name misrepresented the condition’s true nature.

“It’s wonderful that the new name focuses on hormones and acknowledges the metabolic aspect of the condition,” she remarked. “This shift will redefine the conversation, ensuring it’s recognized as the serious and complex health issue it is. Even after years of advocacy for better awareness, we believe that the risk of this change will yield substantial benefits.”

For more detailed information about the name change and PMOS resources in various languages, one can visit the Monash Centre for Health Research and Implementation website.