After more than a decade of global consultation, polycystic ovary syndrome (PCOS) – a condition that affects one in eight women – has been renamed.

The hormonal disorder, estimated to impact 170 million women worldwide, will now be known as polyendocrine metabolic ovarian syndrome (PMOS).

The name change was published in the Lancet and announced at the European Congress of Endocrinology in Prague on Tuesday, after 14 years of collaboration between international societies and patient groups across six continents.

The renaming was spearheaded by the endocrinologist Prof Helena Teede, the director of Melbourne’s Monash Centre for Health Research & Implementation. For too long, experts including Teede say, the misleading nature of the term “polycystic” in PCOS contributed to delayed diagnosis and inadequate medical care.

PMOS is hoped to better reflect the condition’s complex nature – which affects not only the reproductive system in people assigned female at birth but also the metabolism and the risk of diabetes and cardiovascular disease.

‘A much broader condition’

The first thing Maddy Mavrikis was told by her GP when she was diagnosed with PCOS at 15 was that she would probably never have children.

She would later learn that was not true.

Much of her experience of the condition has been confusing and required unlearning what she was first told – starting with the name.

“I never had – and still don’t have – cysts on my ovaries, so never really understood why I was diagnosed with ‘polycystic ovaries’,” she says.

Mavrikis initially went to her doctor because of irregular periods, and a blood test revealed she had high levels of androgens. All women have these male sex hormones but women with PCOS can have an excess, which also explained Mavrikis’ other symptoms including acne and excessive hair growth.

Hormone imbalances can also result in “polycystic ovaries” – a term which in itself is a misnomer, as what appears on ultrasound to be ovarian cysts are in fact eggs in arrested development. People can be diagnosed with PCOS without ovaries that appear “polycystic” – Mavrikis’ ultrasound revealed she didn’t have any, though her GP insisted she would eventually develop them.

The doctor also found she had insulin resistance, which affects most women (about 85%) with PCOS.

Mavrikis remembers her mother – who works in pathology and “knows a lot about hormones because she tests them all day” – questioning the doctor about the name; wasn’t her daughter’s condition more of a hormonal one?

The new name will reflect that. Teede says the term “polycystic” risked confusion with true ovarian cysts, which can enlarge, bleed and require surgery. “There are no abnormal cysts in PCOS.”

Teede says the new name “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 says.

Valuing patients’ voices

Doctors initially thought of the condition as a disease of the ovaries when it was named in 1935.

Research in the decades since found it is caused by an imbalance of hormones, the chemical messengers in the body. The two main hormones affected are insulin, which controls the way the body manages all fuels – sugars, proteins and fats – and the androgen group of hormones.

Imbalance of these hormones affects multiple systems in the body, including metabolic, mental, skin and reproductive health, as well as the risk of diabetes and heart disease.

But the name PCOS continues to contribute to misperceptions that it is primarily a gynaecological condition.

Teede says patients instigated the name change.

“They wanted it fixed,” she says. “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.”

Academic articles have discussed renaming the condition since 1995, and in 2012 a forum on PCOS run by the US National Institutes of Health recommended renaming it.

It’s taken more than a decade to bring it about, Teede says, adding: “The efforts here are unprecedented. Nobody’s put this much effort into a name change ever.

“We want this to stick and to make it not just an idea from a few experts, which is how it used to happen. We used to never consider patient perspectives when we changed the name.”

Teede explains “we had to get everybody on board” – which meant significant involvement from 56 medical and patient societies in every region across all relevant disciplines, because so many different groups look after the condition.

Lorna Berry has been advocating for better education about PCOS for more than 25 years and was invited to become a global consumer representative for the workshops deciding on the name change. She describes the process as robust and really valuing the patient voice.

In one of the groups, a doctor was supportive of a name including the word “reproductive” but changed his mind when she explained why many consumers didn’t want that being the 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,” Berry says.

Teede says: “We needed all those groups involved because 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.”

Monash University’s Centre for Research Excellence in Women’s Health in Reproductive Life first got a mandate in 2023 to change the name by showing that patients and professionals supported it. Then the separate process of surveys and workshops began to decide what the name should change to.

“There was a lot of background concern about changing the name of the condition because it’s been so neglected, so poorly diagnosed, so poorly researched and funded for so long that, quite rightly, patients and consumers were pretty up in arms about the fact that they just wanted to get this right,” Teede says.

After a transition period, the new name will be fully implemented in the next update to international guidelines for managing the condition, to be published in 2028.

‘They are starting to pay attention’

Mavrikis was one of more than 300 readers living with PCOS who shared their stories with the Guardian, with an overwhelming majority describing struggling to get a diagnosis and receive appropriate care for the whole-body condition.

Another, Rosemary,* says when she first asked her GP about whether she might have PCOS, he told her a diagnosis wasn’t going to be useful unless she wanted to have children – which at 17 she didn’t.

He also told her it was unlikely she had the condition because she wasn’t overweight and didn’t have the “look” of a girl with PCOS. When she asked him what he meant by that, she received the reductive answer of “prominent eyebrow ridges and a large belly”.

When she was eventually diagnosed, Rosemary says her care in UK’s National Health Service was “patchy at best” and she frequently encountered 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.”

Her fertility treatment when she was looking to conceive was “fantastic”, she says, but: “I feel dejected about the lack of help I’ve received trying to manage the wider condition post-childbirth.”

Mavrikis has been frustrated by how often doctors relied solely on prescribing her medication without discussing lifestyle interventions such as diet and exercise, which are some of the most important ways to manage symptoms.

Even though the condition can make it easier to gain weight and make weight harder to manage, like so many women she has encountered weight stigma. “What they did tell me was don’t put on weight,” she says.

She adds: “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. I didn’t manage it at all because I was so done with thinking about it.”

Now at a point she is considering starting a family, Mavrikis reflects on the toll that first appointment had on her: “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.”

She says the name change offers her hope it will lead to better care for people in the future, bringing greater awareness of the nuances of the condition, and more willingness “to interrogate your whole system”.

“Changing the name, for me, shows that they are starting to pay attention to it.”

*Name changed to protect anonymity