Polycystic ovary syndrome renamed after global initiative, raising hopes for millions of women

After more than a decade of global consultation, the condition affecting one in eight women worldwide has been officially renamed. Polycystic ovary syndrome (PCOS) will now be known as polyendocrine metabolic ovarian syndrome (PMOS), a change published in The Lancet and announced at the European Congress of Endocrinology in Prague on Tuesday.

The renaming, described by its lead architect Professor Helena Teede as “unprecedented” in its scale of collaboration, aims to correct decades of misunderstanding about a condition that affects an estimated 170 million women globally. Teede, an endocrinologist and director of Melbourne’s Monash Centre for Health Research & Implementation, told the conference that the old name did not capture the “multi-system burden that people with this condition have suffered, and it directs attention to only one organ”.

Why the old name was wrong

The term “polycystic” has been a source of confusion since the condition was first described in 1935 by Stein and Leventhal, who based their observations on ovarian morphology. (Even earlier, in 1721, the Italian physician Vallisneri noted enlarged ovaries with a shiny surface and small cysts.) But the “cysts” seen on ultrasound are not true ovarian cysts — they are eggs in arrested development. Many women diagnosed with PCOS do not have ovaries that appear polycystic at all, yet the name persisted, leading to misperceptions that the condition is primarily a gynaecological one.

Professor Teede emphasised that the word “polycystic” risked confusion with actual ovarian cysts, which can enlarge, bleed and require surgery. “There are no abnormal cysts in PCOS,” she said. The name PCOS, she argued, “moves away from the incorrect focus on cysts … to recognising this is a much broader condition”. The effects of PMOS on the body “are virtually all endocrine – hormonal,” she added.

Research in the decades since the condition was first named has shown it is caused by an imbalance of two main groups of hormones: insulin, which controls how the body manages sugars, proteins and fats, and the androgen group of male sex hormones. This imbalance affects multiple systems — metabolic, mental, skin, reproductive — and raises the risk of diabetes, heart disease, and other complications including endometrial cancer, sleep apnoea, and pregnancy complications. But the old name continued to funnel attention to the ovaries alone, contributing to delayed diagnosis and inadequate medical care.

Calls for renaming have existed since the 1990s, with suggestions such as “hyperandrogenic chronic anovulation” and “metabolic reproductive syndrome” floated but never adopted. A 2012 consensus meeting hosted by the US National Institutes of Health explicitly described the name PCOS as a “distraction and an impediment to progress”. Yet it took another 14 years of painstaking global work to bring about the change.

How the new name was chosen

The effort was led by Monash University’s Centre for Research Excellence in Women’s Health in Reproductive Life, which secured a mandate in 2023 by demonstrating that both patients and professionals supported a name change. A series of surveys and workshops then determined what the new name should be, involving 56 medical and patient societies across every world region and all relevant disciplines.

Teede said patients instigated the push. “They wanted it fixed,” she said. “They know how much they have suffered because of the name, and they were really passionate. And that was what enabled us to pursue it.” The process deliberately avoided the old approach of a few experts deciding in isolation. “We used to never consider patient perspectives when we changed the name,” Teede said.

Lorna Berry, a patient advocate who has worked for better education about the condition for more than 25 years, was invited as a global consumer representative. She described the workshops as “robust and really valuing the patient voice”. In one group, a doctor initially supported including the word “reproductive” in the name, but changed his mind after Berry explained why many consumers did not want that focus. “When I’ve been in the room with these people that are very smart and have all this medical knowledge, I’ve felt an equal,” she said.

Teede explained that terminology mattered deeply. “Whilst ‘reproductive’ may be a more accurate direct term to cover all of the abnormalities in the ovary, but also in the endometrium and in the reproductive health during pregnancy, it also carries very significant stigma,” she told the conference. “There are parts of the world where labelling a woman as having a reproductive condition is directly related to her value and worth in society, where cultural implications were enormous.”

The consensus settled on three descriptors: polyendocrine, metabolic, and ovarian. The final name, PMOS, is intended to reflect the condition’s hormonal, metabolic and ovarian dimensions — acknowledging its impact on endocrine, metabolic, reproductive, dermatological, and psychological health. The app AskPCOS will be renamed AskPMOS as part of the transition.

Patient experiences: confusion, stigma and neglect

Maddy Mavrikis was 15 when she was diagnosed with PCOS. Her GP told her she would probably never have children — a statement she would later learn was false. Much of her experience has been defined by confusion, starting with the name itself. “I never had – and still don’t have – cysts on my ovaries, so never really understood why I was diagnosed with ‘polycystic ovaries’,” she said.

She had gone to the doctor because of irregular periods. A blood test showed high levels of androgens, which explained her acne and excessive hair growth. Her ultrasound revealed no polycystic ovaries, but her GP insisted she would eventually develop them. The doctor also found she had insulin resistance — a condition that affects about 85% of women with PCOS. Mavrikis’s mother, a pathology worker who “knows a lot about hormones because she tests them all day”, questioned the name: wasn’t her daughter’s condition more of a hormonal one?

Mavrikis has also encountered weight stigma. “What they did tell me was don’t put on weight,” she said, despite the condition making it easier to gain weight and harder to lose it. She was frustrated by doctors who relied solely on prescribing medication without discussing lifestyle interventions such as diet and exercise, which are among the most important ways to manage symptoms. “There was a period where I was so fatigued with the whole thing that I stopped going to the doctor. I stopped doing blood tests … I didn’t care.” Now considering starting a family, she reflects: “The amount of anxiety I have around this particular part of my life has been building since I was 15 and I was told that I wasn’t going to have kids.”

Another patient, Rosemary (a pseudonym), described her GP dismissing her concerns when she first asked about PCOS at age 17. He told her a diagnosis would not be useful unless she wanted children, and that she was unlikely to have the condition because she was not overweight and did not have the “look” — which he reductively defined as “prominent eyebrow ridges and a large belly”. When she was eventually diagnosed, Rosemary said her care in the NHS was “patchy at best”. She frequently met medical professionals who assumed fertility was her main priority. “I’ve tried to request blood sugar tests and other blood tests to get a clearer picture of how the condition may be affecting me under the surface but I’ve never got very far,” she said. Her fertility treatment when trying to conceive was “fantastic”, but she added: “I feel dejected about the lack of help I’ve received trying to manage the wider condition post-childbirth.”

The misleading name has contributed to widespread diagnostic delays, with some individuals waiting up to 12 years for a diagnosis. Up to 70% of people with PMOS may remain undiagnosed. Lorna Berry, who experienced significant delays herself and was once advised by a doctor to “starve herself”, has been a long-time advocate for better awareness.

The new name will be fully implemented in the next update to international guidelines for managing the condition, due in 2028, after a transition period. Teede said the effort to bring everyone on board — 56 societies across all regions and relevant disciplines — was necessary because so many different groups look after the condition. “We want every one of those groups and societies to own it in all world regions, and to actually drive the change. Otherwise they don’t get the benefit.”

For Mavrikis, the renaming offers a measure of hope. “Changing the name, for me, shows that they are starting to pay attention to it.”