For nearly a decade, Victoria Hindle tried to convince doctors that her abdominal pain, low mood, heavy periods and weight problems were connected. It was only because a common female health condition was recently renamed that she finally received the right diagnosis.
A team of experts announced earlier this year that polycystic ovary syndrome, widely known as PCOS and a condition that affects millions of women in the United States, is now to be called polyendocrine metabolic ovarian syndrome, or PMOS.
The change, which followed 14 years of deliberation, 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. It can result in high levels of hormones including testosterone, which drive symptoms such as acne, excess body hair, thinning hair, weight gain and irregular or absent periods.
"Many women don't actually have cysts, and the condition is far more complex than the name suggests," said Aled Rees, a professor of endocrinology at Cardiff University who helped lead the renaming process.
Victoria, 43, who lives in Manchester and works in an administrative role at a university, is now finally receiving treatment but is frustrated doctors failed to take her seriously for years.
"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."
Cysts Are Actually Follicles
The name PCOS came about because fluid-filled cavities in tissue have traditionally been labelled cysts. But in this condition they are not cysts at all, said Dr Vikram Talaulikar, an associate specialist in reproductive medicine at University College London Hospitals.
"In fact, they are ovarian follicles, immature eggs surrounded by fluid," he said. "Women with the condition often have at least 20 follicles at any point of their menstrual cycle, because the follicles don't develop further."
Not all women with the condition have these follicles, though they can still be diagnosed if they have at least two of three symptoms: irregular periods, excess body hair or acne. Dr Talaulikar said women who do have the follicles have been wrongly told they would need surgery to remove them, or that they would become infertile.
Michelle Akpata, 30, a radio presenter from north London, was diagnosed with PCOS in 2021 after her weight rose from around 168 pounds to 322 pounds within a year. She is 5-foot-6.
"I felt really low and I worried about it causing long-term health problems," Michelle said. "The extra weight also meant I got joint pains when I exercised, and became out of breath easily." She also developed excess body hair, abdominal pain and fatigue, and was confused by the diagnosis since she had no cysts. She was given pain medication, advised to have laser hair removal privately, and told to eat fewer carbs and more fruit and vegetables.
Insulin Resistance and Diabetes Risk
Professor Bassel Wattar, a consultant obstetrician at Spire St Anthony's Hospital in Surrey, said the condition begins with abnormal signalling from the brain to the ovary rather than starting in the ovaries, which is why the old name no longer reflects current knowledge. The brain triggers irregular secretion of luteinising hormone and follicle-stimulating hormone, which normally control egg maturation and sex hormones such as estrogen. As more luteinising hormone is released, follicle growth stalls and ovulation is delayed or halted, leaving follicles visible on ultrasound scans.
Most women with PMOS have some degree of insulin resistance, meaning the hormone that helps cells absorb glucose is less effective, which in turn causes the ovaries to produce excess hormones. Dr Talaulikar said this raises the risk of type 2 diabetes from as early as a woman's thirties and makes weight gain more likely, since 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 primary care doctors 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. "Before the name change nobody talked about the metabolic side of things, and women may not have been aware they were insulin-resistant and went untreated."
A Decade of Dismissed Symptoms
Victoria first suspected she had PCOS ten years ago when she developed a constant, dull ache in her lower abdomen that flared before her period and eased afterward. An ultrasound scan showed no cysts, and she was told she did not have PCOS. Doctors repeatedly told her to lose weight, which did not help despite her being active. "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."
She was also asked about her periods, which had always been painful and heavy, but no one linked this to PCOS. In 2016 she was referred to a gynecologist who focused only on the heavy bleeding and pain, offering antidepressants for her low mood before periods. In 2018 she had a hormonal IUD fitted, and her periods stopped and her abdominal pain gradually eased.
Five years later she was diagnosed with severely uncontrolled type 2 diabetes, and by June last year she weighed 238 pounds at 5-foot-6. She was prescribed the diabetes drug Mounjaro, or tirzepatide, which she said proved life-changing: her blood sugar returned to normal, she no longer needs metformin, and she has lost 98 pounds. Her periods returned, light and pain-free, and she said her mental health is better than ever.
It was only earlier this year, after Victoria read about the PCOS name change and asked her doctor about it, that she was diagnosed with PMOS. She believes an earlier diagnosis would have meant her weight could have been better controlled and she might not have developed type 2 diabetes, which raises the risk of cardiovascular disease and shortened life expectancy. She also believes it would have spared her years of anguish over what she thought was a failure to lose weight.
"Until the name change, there was a failure to appreciate what was happening to these women, and how their entire metabolic and hormonal health systems were affected by the syndrome. They were often simply told to take the birth control pill and go away," Professor Wattar said.
Weight-Loss Surgery and Mounjaro
Michelle's health did not improve until she was referred for weight-loss surgery, which she had last October. She is now also taking Mounjaro and weighs around 196 pounds. "I can wear what I like and I'm much more confident," she said. "Hopefully the name change will mean doctors understand this condition better."
Doctors Warn More Awareness Needed
Professor Rees, who is medical advisor to the PMOS charity Verity and led the renaming process in the UK, warned that more work is needed to educate doctors and raise public awareness, or "care will not improve significantly."
Dr Talaulikar agreed. "The name change is like lighting the fire, but it takes a long time for people to change their habits clinically," he said. "If women think they may have PMOS they need to make an appointment with their healthcare professional and bring the name change to their attention."
