My weight ballooned to 240 lbs and I was in constant pain for years. Doctors dismissed me… but now I finally know the condition to blame. It silently affects thousands of women and can lead to diabetes. Don’t ignore these signs

For nearly a decade, Victoria Hindle tried to convince doctors that her abdominal pain, low mood, heavy periods and weight issues were connected.

In fact, it’s only because a common female health problem has recently been renamed that Victoria finally has the right diagnosis.

A team of experts announced earlier this year that polycystic ovary syndrome, often referred to as PCOS, a condition that affects millions of women in the US, is now to be known as polyendocrine metabolic ovarian syndrome, or PMOS.

And it’s a simple change that could be hugely significant for thousands of women, as it acknowledges that, rather than just being an ovary-specific disorder, the condition is complex and can affect the brain, ovaries and metabolic system.

It can often result in high levels of hormones including testosterone, responsible for symptoms such as acne, excess body hair, thinning hair, weight gain and irregular or absent periods.

The name change, which came after 14 years of deliberation, was partly intended to shift the emphasis away from cysts and the ovaries, says Aled Rees, a professor of endocrinology at Cardiff University: ‘Many women don’t actually have cysts, and the condition is far more complex than the name suggests.’

Now 43 and diagnosed with PMOS, Victoria is finally receiving the treatment she needs but is frustrated that doctors failed to take her seriously for years.

‘I was told my abdominal pain and digestive issues were irritable bowel syndrome,’ says Victoria, who lives in Manchester and has an administrative role at a university. ‘I asked specialists if my symptoms were related but was told they weren’t – I felt I was going crazy.’

The name PCOS originally came about because any fluid-filled cavities surrounded by a membrane in tissues and organs have traditionally been labeled as cysts.

But in this case they’re not cysts at all, says 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. Women with the condition often have at least 20 follicles at any point of their menstrual cycle, because the follicles don’t develop further.’

Yet confusing the picture, not all women with the condition have these follicles – although they could still be diagnosed if they had at least two of the following symptoms: irregular periods, excess body hair or acne.

Michelle Akpata was diagnosed with PCOS in 2021 after going 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,’ says Michelle, 30, a radio presenter from north London. ‘The extra weight also meant I got joint pains when I exercised, and became out of breath easily.’

PMOS can come with weight gain – or difficulty losing weight – as it affects the hormone insulin, which directs the body to use glucose from the food we eat, as well as playing a role in fat storage.

Michelle had 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 was given pain medication and advised to have laser hair removal done privately – and simply advised to eat fewer carbs and more fruits and vegetables. Meanwhile, women who do have the ‘cysts’ have been wrongly told they would need surgery to remove them – or that they would make them infertile, adds Dr Talaulikar.

‘We now know the condition starts due to abnormal signaling from the brain to the ovary, rather than starting in the ovaries – so the old name doesn’t reflect the current knowledge,’ explains Professor Bassel Wattar, a consultant obstetrician at Spire St Anthony’s Hospital in Surrey.

It’s now thought that the brain triggers the secretion of luteinizing hormone (LH) and follicle-stimulating hormone (FSH) in an irregular way – these reproductive hormones control when women’s eggs mature, as well as levels of sex hormones such as estrogen.

As more LH is secreted, the growth of ovarian follicles is stalled, and ovulation is delayed or halted. These follicles then remain visible in the ovary, appearing as ‘cysts’ on ultrasound scans.

Victoria first suspected she had PCOS ten years ago when she developed a constant, dull ache in her lower abdomen.

She noticed symptoms flared up in the week or so before her period – then improved after it finished. But an ultrasound scan showed no sign of cysts, and she was told she didn’t have PCOS.

Instead, she was repeatedly advised by doctors to lose weight to improve her symptoms. This didn’t work, as she explains: ‘I’d been overweight since childhood despite being very active and not eating differently to anyone else.

‘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 adds: ‘I was also asked about my periods, which had always been painful and heavy, but no one suggested this could be due to PCOS.’

In 2016, she was referred to a gynecologist, who seemed interested only in treating the heavy bleeding and menstrual pain – and offered her antidepressants for her low mood before a period.

In 2018, Victoria had a hormonal IUD inserted – her periods stopped completely and her abdominal pain gradually eased.

Five years later she was diagnosed with severely uncontrolled type 2 diabetes and by June last year, at 5ft 6ins, she weighed 238 pounds.

She was prescribed Mounjaro (tirzepatide) injections for her diabetes. This proved life-changing: as well as her blood sugar levels returning to normal (she no longer needs the diabetes medication metformin), she’s lost 98 pounds.

Furthermore, her periods returned and are now light and pain-free, while her mental health is ‘better than ever’.

But it was only earlier this year that the cause of her problems was revealed – Victoria read about the PCOS name change and asked her new doctor about it. She was then diagnosed with PMOS.

She firmly believes an earlier diagnosis would have meant her weight could have been better controlled, and she might not have developed type 2 diabetes – which in turn put her at increased risk of cardiovascular disease and a shortened life expectancy.

It would also have spared her years of anguish, thinking she’d failed at losing weight.

‘Until the name change, there was a failure to appreciate what was happening to these women,’ says Professor Wattar, ‘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.’

It’s now understood that, in fact, most women with PMOS have some degree of insulin resistance – meaning the hormone that helps cells mop up glucose, keeping blood sugar levels stable, isn’t as effective as it should be. This causes the ovaries to produce hormones.

Insulin resistance increases the risk of type 2 diabetes from as early as your 30s, explains Dr Talaulikar. And it 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 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,’ says Dr Talaulikar.

‘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.’

Lifestyle and diet changes, such as reducing sugar intake, can help PMOS symptoms, as can taking metformin, which improves the body’s sensitivity to insulin.

In Michelle’s case it wasn’t until she was referred for weight-loss surgery, which she had last October, that her health improved.

Since the operation, she’s also now taking Mounjaro and weighs around 196 pounds. ‘I can wear what I like and I’m much more confident,’ she says. ‘Hopefully the name change will mean doctors understand this condition better.’

But Professor Rees – medical advisor to the PMOS charity Verity, and the UK lead on the name-change process – warns that more still needs to be done in terms of educating doctors and raising public awareness, otherwise ‘care will not improve significantly’.

Dr Talaulikar adds: ‘The name change is like lighting the fire, but it takes a long time for people to change their habits clinically.

‘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.’