I was told my weight gain, facial hair and fatigue were normal. Really, they were all signs of this condition that women suffer with for years before getting a diagnosis

Bethany Backhouse, a 27-year-old newly engaged medical researcher from Staffordshire, should be happily lost in her wedding plans with partner Neil. Instead, she worries about her health and whether she will be able to have children.

Bethany has polycystic ovary syndrome (PCOS), a condition that affects around four million women in the UK; But as a new report reveals, the condition is often overlooked and misdiagnosed.

The consequences can be serious, even life-threatening, because if left untreated, the condition can lead to pregnancy complications such as preeclampsia (high blood pressure), miscarriage and premature birth, as well as serious health problems such as type 2 diabetes, heart disease and endometrial cancer.

PCOS is also the leading cause of infertility in young women: studies show that more than 40 percent of cases are linked to the condition.

Bethany first noticed something was wrong four years ago when her period stopped. To relieve severe menstrual pain caused by endometriosis, which she was diagnosed with at age 17, doctors had stopped the woman’s cycle and put her into temporary medical menopause.

However, when the treatment ended, her periods never returned.

‘I was told it was normal, but I knew it wasn’t,’ he says. After seeking help from her GP for two years, Bethany was eventually referred to a gynecologist, where an ultrasound scan revealed she had PCOS.

The diagnosis finally shed light on the unexplained symptoms he had endured for years, including weight gain, stubborn facial hair, and chronic fatigue.

PCOS affects around four million women in the UK but is often overlooked and misdiagnosed

But at 25, it also came as a ‘huge shock’. ‘I knew I wanted kids one day,’ Bethany adds.

While getting the correct diagnosis can be ‘frustrating, challenging and emotional’, what makes the situation worse is that there is so little help available, he says.

His experience is far from unique. More than a third of women with PCOS are waiting more than four years for a diagnosis, and up to 70 per cent go undiagnosed, according to a recent report from the All-Party Parliamentary Group (APPG) on Polycystic Ovary Syndrome, which lays bare widespread failures in NHS care.

The first report, produced in conjunction with PCOS charity Verity, concluded that the condition ‘receives minimal attention in GP and nursing education’.

Consultant gynecologist at the Lister Fertility Clinic in London, Dr. Part of the problem is that PCOS is a ‘complex hormonal and metabolic disorder,’ as Raef Faris puts it.

The exact cause is unclear; One theory is that it is linked to abnormal hormone levels triggered by the ovaries or brain.

And up to 30 genes may be linked to the condition, and it tends to run in families (one study found that 35 percent of mothers and 40 percent of sisters of women diagnosed with PCOS were also affected).

Diagnosis is based on having two of the following: high levels of androgens (‘male’ hormones such as testosterone, which can lead to excess hair and acne); irregular or absent menstruation; and numerous follicles (tiny sacs containing immature eggs) in the ovaries identified on an ultrasound scan.

But even then the picture is not simple; Because although many women with polycystic ovaries have normal hormone levels and fertility, it is possible to have PCOS and abnormal hormone levels without polycystic ovaries.

Some women with PCOS are insulin resistant, which means their cells do not respond to insulin, the hormone that controls blood sugar. This can lead to type 2 diabetes and weight gain. Dr. Faris says losing weight is very difficult for these women.

Yet other women with PCOS remain thin; around 20 per cent have ‘weak’ PCOS, meaning they have elevated male hormones but no insulin resistance.

Worryingly, ‘there is a persistent attitude in the medical profession that PCOS is only about fertility, but it is not,’ explains Dr Faris. ‘We fail women when we ignore all of this. ‘There is a lack of coordinated care between gynecologists, dermatologists, dietitians and psychologists.’

Dr. is a general practitioner with a special interest in women’s health and has the condition himself. In fact, current access to treatment depends on where you live, says Itunu Johnson-Sogbetun.

‘In some regions, women can have an ovarian scan within weeks. In some cases it is six months. And in some areas women with excess hair can have laser hair removal, but elsewhere this is not funded.’

Bethany faced many obstacles in getting the treatment she needed. She was ‘thin as a stick’ until she turned 18, then her weight went from a size 12 to a size 22 in just over two years.

After many unsuccessful attempts to lose weight on her own and being diagnosed with PCOS, she asked to be referred to a dietitian, but her doctor refused.

Studies have found that 74 percent of women with PCOS become overweight or obese, three times more likely than those without the condition.

This extra weight increases the risk of health problems, including type 2 diabetes.

Bethany says: ‘If I had diabetes I could see a dietitian, but in my area with PCOS the only option was bariatric surgery.’

She adds: ‘I was also sent to a sleep clinic because my doctor didn’t believe my fatigue was PCOS-related. They thought it was due to sleep apnea [where you stop breathing temporarily during the night] Because of my weight.”

Rachel Morman, chair of Verity, says the council’s findings confirm what women have long described: ‘They are often dismissed or told their symptoms are normal.’

Treatment depends on the symptoms. Dietary advice is important for those with weight problems, and some women may be prescribed weight-loss shots (GLP-1 drugs such as Ozempic and Wegovy can also increase insulin resistance) or the diabetes drug metformin (which can target insulin resistance, helping to regulate menstrual periods and reduce symptoms such as acne and excess hair), says Dr. Faris.

Irregular menstrual periods are often treated with the combined birth control pill. ‘For excess hair or acne, anti-androgens such as spironolactone or Dianette may be helpful, as well as laser treatments,’ she adds.

Although women often worry that a missed period means their egg supply is depleted, Dr. Faris says the fertility outlook is actually encouraging.

Women with PCOS have plenty of eggs; The problem is ovulation. This can be successfully stimulated with medications such as clomiphene or injectable follicle-stimulating hormones. ‘Fertility treatment has a high success rate,’ he adds.

Consultant gynecologist at the Lister Fertility Clinic in London, Dr. Raef Faris describes PCOS as a ‘complex hormonal and metabolic disorder’.

The APPG report also highlights the serious but often overlooked impact on mental health.

Rates of anxiety and depression are three times higher than in women without the condition. However, there is no standard NHS referral for psychological support.

The good news is that the National Institute for Health and Care Excellence (NICE) has recently announced that it will be adopting international PCOS guidelines. Dr Johnson-Sogbetun says this could help reduce the postcode lottery by setting clear expectations for the type of treatment women should receive.

Rather than having to wait for an ultrasound scan, the guidelines also include the option of a blood test for high anti-müllerian hormone (AMH) levels, which can indicate the high egg count characteristic of PCOS.

This can speed diagnosis, especially in areas where there are long waits for imaging.

After her diagnosis, Bethany was prescribed metformin, but she suffered from known side effects such as severe nausea and vomiting and is now also taking anti-sickness medications.

Although she still doesn’t feel ‘100 percent’, her periods are becoming more regular, so it seems to be working. He was told that if he wanted children he should ‘try sooner rather than later’.

As Bethany puts it: ‘I’m in a committed relationship so I might at least consider it but it’s a big decision.’

In the meantime, she hopes the new guidelines will eventually bring better, more joined-up care: ‘Women deserve better than being told that’s the way it is.’