It’s rare to open a newspaper to find a lead story on women’s health – rarer still for that story to be a positive one. But this week, it was announced that polycystic ovary syndrome (PCOS) is to be renamed as polyendocrine metabolic syndrome (PMOS), following an international campaign contributed to by 56 medical and patient societies. While the change of one little letter may not sound like a big deal, as a person who has PCOS, I can tell you that the potential impact is significant. Finally, the reality of this common and consistently misunderstood condition will be reflected in its name.
According to The Lancet, which published the full paper and announcement, PCOS affects 170 million women during their reproductive years, with 70 per cent of affected individuals thought to be undiagnosed. Part of the reason for those woeful figures is confusion and a lack of awareness around the condition itself.
My own PCOS diagnosis (the name change will be implemented fully in 2028) came after years of struggling with painful and irregular periods, as well as – as was later confirmed by ultrasound – multiple follicles on my ovaries. I was sent away from the hospital without so much as a leaflet, and told that if I wanted to “control” my periods then I could take a contraceptive pill, but that it might be difficult to get pregnant (reader, it was). Honestly, I think the doctors were as baffled by the condition as I was.
In order to receive a diagnosis, you need at least two of the following: irregular periods, excess androgen hormones, or “polycystic ovaries” containing many sacs – or follicles – around the eggs. That’s follicles, not cysts. Because despite having been called PCOS, the condition actually has nothing to do with cysts. Symptoms can include insulin resistance, obesity, type 2 diabetes, cardiovascular disease, acne, hirsutism, alopecia, depression, anxiety, infertility… I could go on. But PCOS affects everyone differently.
I was frequently dismissed by doctors as I didn’t have the condition’s “hallmark” features of excess hair and high BMI. It was when I tried to become pregnant that the condition came sharply into focus. The lack of understanding among doctors meant I had to do a lot of my own research into how I could conceive, which was primarily through tackling the insulin resistance that was causing my symptoms. It was long, hard and – though it ultimately resulted in two perfect babies – gruelling. Later, I came to understand that my mood is also affected by my PCOS, as are the overwhelming sugar cravings I experience at certain points of my cycle. I expect many of my other health niggles are connected too, but it’s difficult to know without anyone to help me connect the dots.
Leila Martyn founded hormonal health brand MyOva after becoming frustrated with the lack of information available when she was diagnosed with PCOS herself. “I have spent years watching the word ‘cystic’ mislead doctors, patients and search engines in equal measure,” she told me. “The old name pointed everything toward the ovaries and away from what’s actually driving the condition for most women: insulin resistance, metabolic dysfunction… a whole-body hormonal picture that goes far beyond what’s happening on an ultrasound. Change the name, and you change what gets investigated, what gets explained and what gets taken seriously at that first appointment.”
Because yes, whilst the name is hugely important, it’s the effect it will have on care that matters most. A global implementation strategy, including a transition period, education, and alignment with health systems, is underway, with an update to international guidelines for managing the condition to be published in 2028.
“What needs to follow this change is a fundamental shift in how that first conversation at the GP goes,” Martyn says. “Insulin resistance, which sits at the root of PCOS for the majority of women, is still not routinely tested for or discussed at diagnosis. That has to change. We also need longer appointments, joined-up care between gynaecology and endocrinology, and far more investment in educating women about their metabolic health from the moment they’re diagnosed.”
There will, of course, be some confusion in the interim. I have spent two decades identifying as someone with PCOS, and I’ll probably be tripping up over the new name for some time – the enormous, creaking beast that is the global medical establishment will also need time to catch up. But whilst it’s easy to resist change for the sake of familiarity, the potential results of this particular overhaul are undeniably worth some short-term confusion.
“Historically, women’s health has been treated as niche medicine rather than mainstream medicine, and that research gap has had real consequences,” says Eve Lepage, reproductive health specialist at cycle tracking app Clue. “It has limited our understanding of how conditions like PMOS intersect with metabolism, cardiovascular health, mental health and even conditions like ADHD or endometriosis. Many patients have long described these overlaps, but research is only beginning to catch up.”
One of the biggest problems with the term PCOS, Lepage explains to me, was that it unintentionally narrowed how people understood the condition. “By emphasising the metabolic and endocrine aspects, the name PMOS could encourage people to recognise symptoms they may not previously have connected to the condition.”
“This is a huge step forward,” Martyn agrees. “One that will finally give women the full picture of their condition and real clarity on the treatment that’s right for them.”
