London - Every morning before her husband Bill wakes, Marianne Ponsonby-White leaps out of bed and rushes to the bathroom to scrutinise her face in the mirror. She isn’t looking for spots or wrinkles but for unwanted hairs.
“Every morning, without fail, at least a dozen thick black hairs have appeared on my cheeks and chin,” Marianne confides.
The 30-year-old sales and marketing manager from Buckinghamshire has polycystic ovary syndrome (PCOS), a hormonal imbalance in which women’s ovaries produce excessive amounts of the male hormone testosterone.
This results in the formation of small harmless cysts as well as symptoms such as excessive hair growth (known as hirsutism), baldness, erratic periods, weight gain, acne and fertility problems.
The condition, which affects one in ten British women, should not be confused with polycystic ovaries, which merely describes the appearance of small cysts on the ovaries. (Roughly 20 percent of women have this condition with no effects at all and no problems conceiving.)
Women with PCOS have both the cysts and the symptoms caused by excess testosterone.
While Marianne is fortunate to have few of the symptoms, she is blighted by excess hair, which she says makes her feel utterly unfeminine.
“As well as waxing my face every fortnight, I use an epilator on my abdomen,” she says. “If I didn’t, the hair on my face and body, which is thick and very dark, would be grotesque.
“Bill is sweet and maintains he doesn’t notice a thing, but it’s impossible for him not to see the hair growth.
“I hate it. I’m fighting what feels like a losing battle against hair sprouting in places no woman should have it.”
The condition can run in families and Marianne believes a great-aunt had it.
“She didn’t have children, and I remember her whiskery chin very clearly,” she says.
Polycystic ovary syndrome can be devastating to women’s self-esteem, says Rachel Hawkes of Verity, a support group for sufferers.
“I have had members contemplating suicide because they simply can’t cope any longer with excessive hair or the constant struggle with weight. One poor woman has to shave three times a day. She takes her razor to work so she can shave at lunchtime.”
Polycystic ovary syndrome affects around three million women, but some experts say GPs fail to take it seriously and that there should be more help available for sufferers, including counselling.
“The condition can have serious repercussions in terms of mental health,” says Professor Helen Mason, an endocrinologist who specialises in PCOS at St George’s Hospital Medical School, London. “I have come across women who simply refuse to leave the house.”
Despite its prevalance, there are issues with underdiagnosis.
“Some GPs are unwilling to diagnose it because they worry that patients will panic about infertility,” adds Professor Mason. “But it is better for women to know that they have PCOS because there are steps they can take to alleviate their symptoms.
“Lots of women just put up with very irregular cycles, bad skin and excess hair — but missing periods is not normal, and if your cycle hasn’t settled down by about age 16 and you have at least one other symptom of polycystic ovary syndrome you should ask your GP to check for the condition,” she emphasises.
As well as underdiagnosis, lack of help is another problem. Verity says 75 percent of sufferers are offered no help with hair removal on the NHS.
“For a woman, growing a beard and moustache is absolutely devastating — this is not a cosmetic condition,” says Rachel Hawkes. ‘There is almost no NHS-funded treatment for hair removal.
“It’s wrong that women should either have to pay for treatment themselves or just put up with it.”
Vaniqa, a prescription cream which inhibits hair growth, is available in some areas. But at £57 for 30g, many primary healthcare trusts do not fund it.
There is a similar postcode lottery for laser hair removal.
Some women are prescribed the contraceptive pill Dianette, which blocks the action of male hormones, to help with hirsutism. “But lots of women can’t tolerate Dianette, and many doctors are unwilling to prescribe it long-term,” says Professor Mason, explaining there are concerns about side-effects such as deep vein thrombosis, though these have not been proven.
She says losing weight is the best way to minimise symptoms of PCOS, but patients are often given insufficient dietary advice.
“Controlling weight is absolutely vital to managing the symptoms of PCOS,” she explains.
This is not only because the condition causes weight gain — and so raises the risk of heart disease and type 2 diabetes — but also because being overweight exacerbates the symptoms. Fat cells produce more insulin, which in turn increases the production of male hormones.
Although women are born with the condition, many are not diagnosed until they are in their early 20s. This is because lifestyle changes during early adulthood exacerbate the symptoms.
“In young adulthood, many women leave home. They eat less healthily, do less exercise and they have stopped growing — all factors that can lead to weight gain,” says Dr Gerard Conway, an endocrinologist at the Institute for Women’s Health, University College London.
However Marianne, who is a size 14, says losing weight didn’t make any difference to her hirsutism.
She first noticed excess facial hair when she was 22. “I suddenly started to grow whiskers and a moustache and thick dark hair on my body — it was horrific.”
She put up with the problem for two years before seeking help from her GP. “I just kept thinking it would go away,” she explains.
She was referred for an ultrasound scan which confirmed it was due to PCOS. But although she now knew what was causing her excessive hair growth, Marianne didn’t get any help or advice, and was left to research the condition herself.
She was also shocked to discover that many women with the syndrome have problems conceiving.
About 40 percent of women with PCOS will experience fertility problems. Raised testosterone levels mean that sufferers ovulate very irregularly, and so find it harder to get pregnant naturally.
Marianne was fortunate. She conceived her daughter Beatrice naturally five years ago at the age of 25, and is now eight months pregnant with her second child. “I am very lucky,” she says.
Around a quarter of women with PCOS will need assistance with conception, but experts say weight loss will often help sufferers to become pregnant.
Anna Thorpe, 30, a teacher from Preston, believes losing weight helped her to ovulate normally. “Because I have PCOS, I only had a period about once every 18 months,” she says.
“My partner Steven and I want to start a family. At 13st, I was advised to lose weight to try to kickstart my ovaries into action.”
Over the past year she has lost 2st — and for the first time ever she is having regular periods. “Having a baby finally feels like a real possibility,” she says happily.
If losing weight does not help, women may be prescribed Clomid to stimulate ovulation.
Marianne says that, for her, one of the worst things about having to live with PCOS is fear of the unknown. “At the moment, I don’t have to contend with acne or baldness, but I can’t help wondering if that’s what’s in store for me in the future.”
The best thing a woman can do, Professor Mason says, is maintain a healthy weight. “It is key to managing the condition,” she stresses. - Daily Mail