Polycystic ovary syndrome (PCOS), a condition that affects up to four million women in the UK, has been renamed polyendocrine metabolic ovarian syndrome (PMOS) by a team of experts, after 14 years of deliberation.
The change acknowledges that the condition is not just an ovary-specific disorder but a complex one that can affect the brain, the ovaries and the metabolic system, often raising levels of hormones including testosterone, which can cause acne, excess body hair, thinning hair, weight gain and irregular or absent periods.
For Victoria Hindle, 43, who lives in Manchester and works in an administrative role at a university, the renaming finally brought an answer after nearly a decade of being told her symptoms were unrelated. She first suspected she had PCOS ten years ago when she developed a constant, dull ache in her lower abdomen that flared up in the week before her period.
"I was told my abdominal pain and digestive issues were irritable bowel syndrome," Victoria said. "I asked specialists if my symptoms were related but was told they weren't. I felt I was going crazy."
Why the name changed
Aled Rees, a professor of endocrinology at Cardiff University, said the name change was partly aimed at shifting the emphasis away from cysts and the ovaries. He said many women do not actually have cysts, and the condition is far more complex than the name suggests.
The original name arose because fluid-filled cavities in tissue are traditionally labelled cysts. But Dr Vikram Talaulikar, an associate specialist in reproductive medicine at University College London Hospitals NHS Foundation Trust, said they are in fact ovarian follicles, immature eggs surrounded by fluid, and that women with the condition often have at least 20 follicles at any point in their cycle because the follicles fail to develop further. Not all women with the condition have these follicles, but they can still be diagnosed if they have at least two of the following: irregular periods, excess body hair or acne.
Dr Talaulikar said women who do have the follicles have wrongly been told they would need surgery to remove them, or that they would be left infertile.
A second case: Michelle Akpata
Michelle Akpata, 30, a radio presenter from north London, was diagnosed with PCOS in 2021 after her weight rose from around 12 stone to 23 stone within a year (she is 5ft 6in). "I felt really low and I worried about it causing long-term health problems," she said. "The extra weight also meant I got joint pains when I exercised, and became out of breath easily."
Michelle also developed excess body hair, abdominal pain and fatigue. "I didn't understand my diagnosis, seeing as I didn't have cysts on my ovaries," she said. She was given painkillers, advised to have laser hair removal privately, and told to eat fewer carbs and more fruit and vegetables.
How the brain and hormones are involved
Professor Bassel Wattar, a consultant obstetrician at Spire St Anthony's Hospital in Surrey, said the condition is now known to start with abnormal signalling from the brain to the ovary, rather than starting in the ovaries, meaning the old name no longer reflects current knowledge.
The brain is thought to trigger irregular secretion of luteinizing hormone (LH) and follicle-stimulating hormone (FSH), which normally control when eggs mature and regulate sex hormones such as oestrogen. As more LH is released, the growth of ovarian follicles stalls and ovulation is delayed or halted, leaving the follicles visible on ultrasound scans as apparent cysts.
Victoria's diagnosis and treatment
An ultrasound scan showed no cysts, so Victoria was told she did not have PCOS and was repeatedly advised to lose weight instead. "I'd been overweight since childhood despite being very active and not eating differently to anyone else," she said. "I tried eating less and moving more but it never worked, so I accepted being bigger and tried not to let it get me down."
In 2016 she was referred to a gynaecologist who focused on her heavy bleeding and menstrual pain, and offered her antidepressants for low mood before her period. In 2018 she had a coil fitted, which stopped her periods and gradually eased her abdominal pain.
Five years later she was diagnosed with severely uncontrolled type 2 diabetes, and by June last year she weighed 17 stone. She was prescribed Mounjaro (tirzepatide) injections for her diabetes, which she said proved life-changing: her blood sugar levels returned to normal, she no longer needs the diabetes medication metformin, and she has lost 7 stone. Her periods have also returned, now light and pain-free, and she said her mental health is better than ever.
It was only earlier this year, after reading about the PCOS name change, that Victoria asked her new GP about it and was diagnosed with PMOS. She believes an earlier diagnosis would have meant her weight could have been better controlled, and that she might not have developed type 2 diabetes, which raises the risk of cardiovascular disease and shortens life expectancy.
The metabolic risks
Professor Wattar said that until the name change, there was a failure to appreciate how the entire metabolic and hormonal health systems of these women were affected, and that they were often simply told to take the contraceptive pill.
Most women with PMOS have some degree of insulin resistance, meaning the hormone that helps cells absorb glucose is less effective, prompting the ovaries to produce more hormones. Dr Talaulikar said insulin resistance raises the risk of type 2 diabetes from as early as a woman's thirties and makes weight gain more likely, as the body stores calories as fat rather than burning them, increasing the risk of high blood pressure, high cholesterol, heart disease and fatty liver disease.
"All of the metabolic complications stem from insulin being less effective. This is why GPs need to check blood-sugar levels, cholesterol, blood pressure and weight regularly in women with PMOS, and treat them accordingly, rather than just focusing on periods and fertility," Dr Talaulikar said. He added that before the name change, nobody talked about the metabolic side of the condition, and women may not have known they were insulin-resistant and gone untreated.
Lifestyle and diet changes, such as reducing sugar intake, and taking metformin to improve the body's sensitivity to insulin, can help with PMOS symptoms.
What comes next
Michelle was referred for weight-loss surgery, which she had last October, and her health has since improved. She is now also taking Mounjaro and weighs around 14 stone. "I can wear what I like and I'm much more confident," she said. "Hopefully the name change will mean GPs understand this condition better."
Professor Rees, medical adviser to the PMOS charity Verity and the UK lead on the renaming process, said more still needs to be done to educate doctors and raise public awareness, warning that otherwise care will not improve significantly.
Dr Talaulikar said the name change was like lighting the fire, but that it takes a long time for people to change their habits clinically. He said women who think they may have PMOS should make an appointment with their healthcare professional and bring the name change to their attention.
