PCOS renamed to PMOS to improve diagnosis and care

Image credit: Sora Shimazaki on Pexels

Unappreciated

PMOS is characterised by fluctuations in hormones, with impacts on weight, metabolic and mental health, skin, and the reproductive system.

The name has reduced a complex, long-term hormonal or endocrine disorder to a misunderstanding about ‘cysts’ and a focus on ovaries. This contributed to missed diagnoses and inadequate treatment.

Professor Helena Teede, director of Monash University’s Monash Centre for Health Research and Implementation and an endocrinologist at Monash Health, led the name change process after spending decades researching the condition and seeing the patient impacts firsthand.

“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,” said Teede.

“It was heartbreaking to see the delayed diagnosis, limited awareness and inadequate care afforded to those affected by this neglected condition.

“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.”

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14-year project

The name change journey, published in The Lancet, took 14 years of global collaboration between experts and those with lived experience.

Teede led the process alongside International Androgen Excess and Polycystic Ovary Syndrome Society (AE-PCOS Society) president, Professor Terhi Piltonen, an international co-lead from Oulu University and Oulu University Hospital, Finland; AE-PCOS Society executive director Anuja Dokras from the United States; and chair of Verity (PCOS UK), Rachel Morman, with 56 patient and professional organisations, including the Endocrine Society.

In a related paper by the same experts, researchers have found there is no increase in abnormal ovarian cysts in the condition, further demonstrating the need to change the name.

The patient-focused effort resulted in more than 22,000 survey responses and involved multiple international workshops with patients and multidisciplinary health professionals.

The three-year transition period is supported by a major international education and awareness campaign reaching those affected — health professionals, governments and researchers around the world — with the new name to be fully implemented in the 2028 International Guideline update.

Teede said it was the largest initiative to change the name of a medical condition.

“The agreed principles of the new name included patient benefit, scientific accuracy, ease of communication, avoidance of stigma, cultural appropriateness and accompanying implementation,” she 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.

“Make no mistake, this is a landmark moment that will lead to desperately needed worldwide advancements in clinical practice and research.”

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Diverse needs

Piltonen said an important part of the renaming process was considering the diverse needs of various cultures.

“It was essential that the new name was scientifically correct but also considered across diverse cultural contexts to avoid certain reproductive terms that could heighten stigma and be harmful for women in some countries,” Piltonen said.

“This made a culturally and internationally informed consultation critical to getting it right.”

Lorna Berry, an Australian woman who has PMOS and played a key role in the renaming process, said the result will be life-changing.

“This is about accountability and progress,” she said.

“It is about my daughters, their daughters, and the countless women yet to be born.

“We deserve clarity, understanding, and equitable healthcare from the very beginning.”

Rachel Morman, chair of Verity (PCOS UK), was a lived experience expert on the global name change process and said the previous name misrepresented the true nature of this condition.

“It is fantastic that the new name now leads with hormones and recognises the metabolic dimension of the condition,” she said.

“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.”