The original name has caused misunderstanding about the condition
A global effort is under way to spread awareness of the new name for Polycystic Ovarian Syndrome, also known as PCOS. This condition affects over 3.1 million people in the UK, affecting their weight, metabolic health, mental health, hormones, skin, reproductive system and more.
It is a chronic and complex hormonal or endocrine disorder but researchers have found that people with the condition have no increase in abnormal ovarian cysts. That means that the main characteristic the name had been based on was incorrect.
Experts have been pushing for a name change for over a decade to prevent spreading further misunderstandings and oversimplifications of the disorder. It’s hoped that the new name, Polyendocrine Metabolic Ovarian Syndrome or PMOS, will improve understanding, diagnosis and care for patients with the condition.
“What we now know is that there is actually no increase in abnormal cysts on the ovary, and the diverse features of the condition were often unappreciated. It was heart breaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition,” said Professor Helena Teede.
The Director of Monash University’s Monash Centre for Health Research & Implementation and an endocrinologist at Monash Health said: “While international guidelines have advanced awareness and care, a name change was the next critical step towards recognition and improvement in the long term impacts of this condition.”
The name change journey has now been published in The Lancet medical journal. It started 14 years ago as a collaboration of global experts and people with lived experience of the condition.
Professor Teede was among those leading the process alongside a number of experts and organisation leads including Rachel Morman, chair of the UK PCOS charity Verity. Over the next three years, health professionals, governments and researchers will have a transition period to replace the name. The PMOS name is expected to be fully implemented in the 2028 International PMOS Guideline update.
Professor Teede said: “The agreed principles of the new name included patient benefit, scientific accuracy, ease of communication, avoidance of stigma, cultural appropriateness and accompanying implementation. 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.
“Make no mistake, this is a landmark moment that will lead to desperately-needed worldwide advancements in clinical practice and research.” AE-PCOS Society President, Professor Terhi Piltonen, explained that the new name had been carefully chosen to avoid “stigma” in diverse cultural contexts while also being scientifically correct.
Rachel Morman, Chair of Verity (PCOS UK), was one of the experts with lived experiences weighing in on the name change. She said: “It is fantastic that the new name now leads with hormones and recognises the metabolic dimension of the condition.
“This shift will reframe the conversation and demand that it is taken as seriously as the long-term, complex health condition it is. Despite decades of tireless advocacy to improve awareness, we recognised that the risk of change would be worth the reward.”
The Monash Centre for Health Research and Implementation website has more information and resources about PMOS.
