PCOS Renamed PMOS to Improve Diagnosis & Treatment

Polyendocrine Metabolic Ovarian Syndrome (PMOS) is the new term for the condition known as Polycystic Ovary Syndrome (PCOS) that affects 1 in 8 and affects over 170 million women worldwide.

More than 50 patient and professional organizations, including the Endocrine Society, took part in the process to develop the new name. PMOS is characterized by fluctuations in hormones, with impacts on weight, metabolic and mental health, skin, and the reproductive system.

The term has for too long been taken to mean a simple long-term hormonal or endocrine disorder, and an incorrect understanding of ‘cysts' and an over emphasis of ovary-related. This led to misdiagnosis and inadequate treatment.

The name change was led by Professor Helena Teede, Director of Monash Centre for Health Research & Implementation at Monash University, an endocrinologist at Monash Health, and someone who has spent decades researching the condition, and witnessing the impacts on the patients themselves.

“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,” Helena Teede, who is an Endocrine Society member.

“It was heart-breaking to see the delayed diagnosis, limited awareness and inadequate care afforded 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.”

The name change journey took 14 years of international collaboration with experts and people with lived experience, and is published in The Lancet today.

Helena co-led with International Androgen Excess and Polycystic Ovary Syndrome Society (AE-PCOS Society) President, Professor Terhi Piltonen, Oulu University, Finland, an international co-lead, and AE-PCOS Society Executive Director Anuja Dokras, USA, and Chair of Verity (PCOS UK) Dr Rachel Morman.

• PCOS was renamed PMOS to better reflect the condition’s hormonal and metabolic impacts
• Experts say the old name caused misunderstanding, delayed diagnosis, and poor treatment
• The change followed 14 years of global research and patient-led consultation

Researchers in a related study by the same experts have discovered that there was no increase in abnormal ovarian cysts in the condition either, emphasizing the need to change the name.

The patient-centred initiative led to over 22,000 responses to the survey, and included several workshops with patients and multi-disciplinary health professionals from around the world.

A comprehensive international education and awareness campaign to educate and inform those affected by the change, such as health care providers, governments and researchers globally, on the new name will follow through the three-year transition period and will be finalized in the 2028 International Guideline update.

Helena 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.”

An important factor in the renaming process was taking into account the different needs of different cultures, Piltonen said.

“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 was among those involved in the renaming process, said that she was happy the outcome 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, which stated that the previous name inaccurately represented the nature of this condition.

“It is fantastic that the new name now leads with hormones and recognizes 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 recognized that the risk of change would be worth the reward.”