PMOS (Polyendocrine Metabolic Ovarian Syndrome), a condition previously known as Polycystic Ovary Syndrome (PCOS), impacts 1 in 8, or more than 170 million women worldwide. It is characterised by fluctuations in hormones, with impacts on weight, metabolic and mental health, skin, and the reproductive system.

For too long, the name has reduced a complex, long-term hormonal/endocrine disorder to a misunderstanding about “cysts” and a focus on ovaries – causing missed diagnoses and inadequate treatment.

Through the global effort of the International PCOS Network, the name has now been changed to properly reflect the genetic origins and diverse physiological and clinical features of the condition. The name PCOS was inaccurate, as there is no increase in abnormal cysts on the ovary in this condition, only underdeveloped eggs that can look like cysts on ultrasound. Moreover, excessive focus on the ovary left out other important symptoms that women experience. The new name, PMOS, describes the condition as it is: an endocrine, metabolic, reproductive, and dermatological condition.

The name change was driven by the women living with PMOS, their voices, and their advocacy. Doctors and health professionals strongly supported the change, with benefits believed to outweigh the risks.

The vigorous name change process: 14 years of global collaboration

Professor Helena Teede, Director of Monash University’s Monash Centre for Health Research & 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,” Professor Teede said.

“It was heartbreaking 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, published today in The Lancet, took 14 years of global collaboration between experts and those with lived experience.

Professor 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 US and Chair of Verity (PCOS UK) Rachel Mormon, with 56 patient and professional organisations.

Professor 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.”

“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.”

Professor Piltonen considers that an important part of the renaming process was acknowledging 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,” Professor Piltonen said.

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

From PCOS to PMOS: significance for women themselves

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

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.”

Implementation of name change: three-year transition period

The last step of the name change process is implementation. The evolution from PCOS to PMOS will help to ensure the condition is not seen as a novelty but as a transformative update based on a better scientific understanding of the condition.

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.

Find out more about the name change and access PMOS resources in multiple languages on the Monash Centre for Health Research and Implementation website.

Suomessa nimenmuutosprosessissa mukana oli Gynekologinen potilasjärjestö Korento ry. Korento ry:n sivulta löydät tietoa ja resursseja PMOS:sta suomeksi.