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Overweight & Misunderstood
OVERWEIGHT & MISUNDERSTOOD - COVER STORY.
By JANE SEARLE, DR CLARE BOOTHROYD.
2,391 words
10 May 2003
The Australian
English
(c) 2003 Nationwide News Proprietary Ltd
Many Australian women suffer from a mysterious illness that causes weight gain and infertility. Jane Searle reports WHEN Jodie Gaywood was denied adoption rights because of her weight, she cited a condition the authorities refused to recognise.
It's a syndrome that affects 5 to 10 per cent of women worldwide, yet remains widely misdiagnosed and poorly understood.
Polycystic Ovary Syndrome has baffled doctors since the 1800s, when it was known as "diabetes of the bearded woman".
Linked to an excess of insulin and male hormone, PCOS commonly leads to infertility, hirsutism (excess body hair) and obesity.
The risks of diabetes and cancer are also increased several-fold.
"Apparently PCOS was always in my system, but there was a time I must have been stressed and it broke out," Gaywood says.
"I had normal periods from 13, and went on the birth control pill at 17.
"When I came off the pill one year later, I didn't get my period back.
"Within two months I put on 30kg and thought, `Wow - this isn't normal'. The doctor did some lab tests and diagnosed me." Gaywood also suffered from mood changes, thought to be caused by excess male hormone.
"I used to be really quiet, and all of a sudden now I'll snap at anyone and burst into tears," she says.
"I'm married, and for the past two years I've been a real ***** to live with. You get major hormone problems, and every second day I've felt really sick.
"But to tell the honest truth, I wouldn't care about Polycystic Ovary Syndrome at all, if I could have kids."
The 21-year-old's woes with PCOS came to a climax early this year, when Western Australian authorities denied Gaywood adoption rights, because her weight, at 120kg, was judged too high for the long-term interests of a child. Gaywood argued that her condition made weight loss difficult, but has been asked for "more proof" of PCOS.
Professor Robert Norman, head of Reproductive Medicine at The Queen Elizabeth Hospital in Adelaide, calls Polycystic Ovary Syndrome "the commonest hormone condition of women - far above diabetes or thyroid disease".
"About 20-25 per cent of women have ultrasound evidence of polycystic ovaries," Norman says.
"However, most of these women can be normal in every other respect. Probably 5 to 10 per cent of them have polycystic ovaries, plus elevated male hormones or insulin resistance."
While there is no universal definition for PCOS, women generally require at least two of three symptoms: an excess of male hormones, irregular menstruation, or infertility, and ovarian cysts.
Famously labelled "The Hidden Epidemic" by American specialist Dr Samuel S. Thatcher, the sheer variety of symptoms means PCOS is often misdiagnosed.
"I think it's only recently that PCOS has been understood," Monash IVF fertility clinic reproductive endocrinologist Professor Gab Kovacs says.
"It's just so complicated, and it manifests in so many different ways - from acne to overweightness, to someone who's skinny and has irregular periods. You see these symptoms all the time and it's easy to think of other causes than PCOS."
The contraceptive pill is also believed to mask PCOS in many women.
"From my experience PCOS is very badly under-diagnosed in teenage years, because many teenagers have abnormal periods and go onto the pill to regulate them," Norman says.
"It's only later in life when women get off the pill to get pregnant that they find they've had PCOS all these years."
Acne, another symptom of the condition, is also masked by the pill.
While the cause of the syndrome remains elusive, doctors can only treat the symptoms. "PCOS is not clear cut, like colour blindness or hemophilia. Probably a number of genes are involved," Kovacs says.
"There is no cure. The underlying cause is an abnormality in metabolism - so all you can do is look at the particular problems a woman has, and help her so those problems are minimised."
The genetic component of PCOS means the syndrome is often passed through generations. It's a concept familiar to Fiorella Trapuzzano.
"My great grandmother had a lot of miscarriages, and it took my mum eight years to get pregnant between my sister and me," Trapuzzano says. "My grandmother has diabetes, and she definitely has PCOS. We think my sister has it as well."
Continued - Page 2 From Page 1 Interestingly, PCOS may also be transmitted through males.
"If you're a woman and you have PCOS your sister has a 50 per cent chance of having it too," Norman says.
"But it can also be transmitted through the father's side. I did a study about 10 years ago where I showed insulin resistance was common in brothers of women who had PCOS."
Trapuzzano, 20, believes the first signs of her syndrome appeared at age 15.
"I started to get depression and my periods were continuous - I had a period that lasted six months, and my GP said that, being young, my periods were just irregular," she says.
Diagnosed one year later, her insulin levels were dangerously high.
"Your insulin levels are meant to be below 11. Mine were 36 because I hadn't treated my condition when I first found out about it," she says.
Insulin resistance, found in 50-70 per cent of PCOS sufferers, is the chief cause of obesity and diabetes. Because PCOS women are resistant to their own insulin, the pancreas cranks out more insulin to compensate.
Higher insulin levels trigger increased fat uptake by the cells - which react by becoming even more insulin resistant.
It's a vicious cycle that can erode the most carefully-managed diet and exercise plan.
"It's really hard - the fact that you walk every day and cut down food-wise on whatever you can and the weight just doesn't budge," Gaywood says. "Growing up, I didn't really eat junk food and barely ate.
"It's very rare to find a doctor who will admit you're overweight because of PCOS. Fertility doctors have made so much money out of me with weight loss tablets."
Trapuzzano agrees. "I can't think of the countless times I've had comments about my weight," she says.
"A lot of women see PCOS just as a fertility condition, and I'm sure for couples who are trying to conceive it must be incredibly frustrating.
"But having PCOS before that stage in life is still incredibly difficult to deal with - it's really hard growing up being twice everyone else's size and putting on weight without knowing what's happening."
Diabetes is another concern. "When you've got PCOS plus obesity, you have a very good mixture for diabetes," Professor Norman says.
"It's generally accepted that overweight women with PCOS have at least four times the risk of diabetes."
While the diabetic drug metformin is widely used for insulin resistance, there is no consensus on its effectiveness. But lifestyle changes - such as cutting out foods that drastically increase insulin levels - are recognised as key to PCOS management.
Trapuzzano lost several kilograms and overcame depression, after cutting carbohydrates and taking metformin. Her insulin levels are now just above average, and her menstruation is no longer continuous.
Norman says lifestyle changes can drastically reduce the severity of symptoms.
"We run a group we called Fertility Fitness in Adelaide, where these women are taught good exercise and eating habits," he says.
"They don't lose a lot of weight, but almost all of them will develop normal periods within about four months - and many get pregnant."
While conventional therapies have proved ineffective for Gaywood, a controversial treatment has brought her hope.
Naltrexone is commonly used to treat drug addicts for withdrawal, and its application for PCOS is still experimental.
"For about two months I've had a naltrexone implant in my stomach, and it's brought on one period," Gaywood says.
Norman has doubts. "Naltrexone is not a recommended treatment for PCOS," he says. "It's an experimental drug for hormone disorders in the brain - I have never seen it used in a validated treatment for patients with PCOS."
Last year, an Italian study over six months showed naltrexone treatment reduced body fat, improved hormone profiles, and lowered insulin resistance in 10 obese PCOS women. However, none was allowed to conceive, due the unknown effects on fetuses.
Gaywood is believed to be the world's first PCOS woman to take naltrexone while trying to fall pregnant.
After two months with the implant, she says results look promising.
"I've ovulated for the first time, and my moods have completely changed. I've been quite normal for the past two months and I barely feel sick at all."
A recent ultrasound also showed no evidence of her ovarian cysts.
Fiona Corker, president of the Polycystic Ovarian Syndrome Association of Australia, echoes the need for further doctor education.
"Often when women with PCOS go to their doctors, the GP will say she's better educated than they are. We've got women (in our association) who've gone more than 20 years without being diagnosed," she says.
"A lot of women with PCOS are diagnosed with infertility, and doctors will just say `Go away, and come back if you need to get pregnant'."
While Gaywood and Trapuzzano have both struggled with hormone problems, neither has experienced hirsutism - the excess facial and body hair caused by too much male hormone.
"Many women complain that (PCOS) is a very unfeminine disease because of the male attributes," Corker says.
"You get hairy, you get pimples and you put on weight. A lot of women have trouble with acne and hirsutism."
While specialists agree that GP recognition is improving, Norman says self-awareness is crucial.
"Women need to ask themselves - if I have had irregular periods since I was a teenager and more hair growth than I expect I should, then I should see someone who knows about Polycystic Ovary Syndrome.
"Even if you don't want babies - even if you're not worried about your periods. And any doctor who sees a teenager with irregular periods needs to say `Is this PCOS?"' What is PCOS? PCOS is the most common endocrine (hormone) disorder in women of reproductive age worldwide.
It is also known as Stein-Levanthal Syndrome after the doctors who linked PCOS to ovarian cysts in 1935.
Despite its namesake, some PCOS women may have healthy, normal looking ovaries.
As a syndrome, PCOS has no characteristic feature, but a set of symptoms that vary among women.
Some specialists believe risk of heart disease may be higher in PCOS women - who often have high cholesterol, and a body shape unfavourable for heart disease.
The risk of cancer in the lining of the uterus is increased for PCOS women who do not menstruate regularly.
Infertility is commonly caused by excess androgens (male hormones) produced by the ovaries.
While some male hormone is critical for female health, high levels wreak havoc with ovulation.
Cysts are formed by mature follicles that are not released during ovulation.
Source: Polycystic Ovarian Syndrome Association of Australia, Professor Gab Kovacs.
Lifestyle change the key to easing ovarian disorder SECOND OPINION POLYCYSTIC Ovarian Syndrome (PCOS) is the most common hormonal disorder affecting women of childbearing years. Some women are lean and some are overweight.
PCOS is associated with increased facial and body hair, irregular or absent periods and sometimes difficulty getting pregnant.
Long-term implications of having PCOS include an increased risk of the development of diabetes because of an associated problem called insulin resistance.
Whether heart disease and cancers are increased is uncertain.
Absent periods predispose to thickening of the lining of the womb called endometrial hyperplasia, which can, rarely, lead to cancer of the lining of the womb - a catastrophe in a young woman.
Taking medical treatment to induce regular periods such as the contraceptive pill is a good way to avoid this small but important risk.
The hairiness, scant periods and infertility become worse when women gain weight. Avoiding weight gain by prudent dieting and regular exercise is essential.
Australians live in an increasingly obese society, withrising numbers of obese children and the average Australian adult gaining 1kg a year. While insulin resistance is a problem with PCOS it is not responsible for the weight gain.
In fact, insulin sensitivity (the opposite to insulin resistance) makes people more likely to gain weight.
There are a few ways to improve insulin resistance - weight loss, exercise, the use of a drug called metformin and some newer drugs called glitazones (the last group tends to increase weight gain). Weight reduction reduces insulin resistance and over a long period of time, excess body hair reduces.
Weight loss brings about a quicker improvement in the menstrual cycle and return of fertility. Lifestyle change is extremely effective in reducing the risk of diabetes - particularly once the halfway house to diabetes (called impaired glucose tolerance) has developed.
If lifestyle change is not effective, the drug metformin reduces the risk of progression to diabetes but it is not as effective as lifestyle change, has side-effects and its effects may tend to reduce with time. Lifestyle change is therefore much more desirable albeit less palatable.
While weight loss improves fertility, not all women achieve a pregnancy and other treatments may be required.
There are many ways of helping a woman with PCOS with infertility problems but IVF (in-vitro fertilisation) is the last resort as women with PCOS are at increased risk of developing a potentially life-threatening complication called ovarian hyperstimulation.
Hairiness is difficult to treat;the contraceptive pill is effective but takes six months to see full effect and if the woman is the same weight when she ceases the contraceptive pill the hairiness gradually returns.
Information on women with PCOS after menopause is scant; the risk of diabetes remains and regular screening for diabetes should be done, but risks of cardiac disease are uncertain. There is a great need for further research into this common and often incapacitating condition.
There is an excellent support group, the Polycystic Ovarian Syndrome Association of Australia, at www.possa.surak.com.au Dr Clare Boothroyd, Reproductive endocrinologist and gynecologist, Greenslopes Private Hospital, Brisbane.
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Thanks, Kat!
Kathryn
