Posh's Poly what?
It affects about 100,000 women in the Republic and can lead to infertility, diabetes and heart disease - but Polycystic Ovary Syndrome (PCOS) is little understood and difficult to diagnose
Clodagh Fitzpatrick is 35 and works in marketing. She has always struggled with her weight. Her periods have been irregular since she was a teenager. When she reached 30, two things happened: she developed really severe acne and her weight suddenly increased. She also experienced quite severe mood swings.
Louise Caldwell is 24 and works with an Internet broadcasting company. She is not overweight, but has often had as few as two periods a year. When she was 19, she noticed a marked hair growth on her chin and upper lip. A year later, she found she was eating erratically.
Despite the differences in their symptoms, both women have the same condition: Polycystic Ovary Syndrome (PCOS).
PCOS is seen as a different condition today from when I trained as a doctor. We were taught to suspect the syndrome just in women who were obese, had excess body hair, had few periods and were infertile.
While the involvement of the sex hormone was always understood, there was no suggestion that the condition could affect women of normal weight, lead to heart disease or diabetes or that insulin had a central role to play in the syndrome.
PCOS is a difficult condition for patients to deal with, even without our latest knowledge about possible consequences. It is not very pleasant for a woman to have to shave her face or chest on a daily basis; nor is it easy when you develop severe acne in your 30s, or find it almost impossible to lose excess weight. And with many women postponing having a family until later in life, the fertility problems associated with PCOS can cause a nasty shock if the diagnosis is delayed until someone is in their late 30s or early 40s.
As the cases of Clodagh Fitzpatrick and Louise Caldwell illustrate, PCOS affects women differently. There is a broad range of symptoms and signs, any combination of which can signal the likely presence of the syndrome. But what has transformed the condition is research which points to PCOS being a common but more complex disorder.
It is estimated that up to 10 per cent of women have PCOS; in the Republic, more than one million women are aged between 15 and 59, which means that approximately 100,000 women here have the disease.
According to Dr John Nolan, consultant endocrinologist at St James's Hospital in Dublin: "We do not yet fully understand the disease. What is clear, however, is that PCOS is a classical insulin-resistance syndrome".
It is part of the same process which is leading to an epidemic of type II diabetes, he says. All the factors which push us towards insulin resistance drive up the levels of diabetes and PCOS. Our Western diet, our failure to exercise adequately and abdominal obesity all lead to a situation in which cells in the body become less responsive to insulin. As insulin controls sugar levels, the body has to pump out more insulin to maintain a normal blood sugar.
Higher levels of insulin then stimulate the production of androgens (male hormones) by the ovaries. It also causes the pituitary gland to produce more luteinising hormone (LH), which acts as a stimulus for egg production in the ovaries.
However, these eggs become arrested in their development and ovulation does not take place because the ovary is covered with multiple cysts which gave the syndrome its name. The elevated levels of male hormone in the woman's body can give rise to acne, excessive facial and body hair and male pattern baldness.
How do doctors diagnose PCOS? Dr David Walsh, consultant gynaecologist at the Sims Clinic in Dublin, emphasises the importance of taking a thorough history and carrying out a full clinical examination. "A vaginal rather than a pelvic ultrasound is crucial," he says, in order to visualise the cystic appearance of the ovaries and the increased activity of its central cells. Blood tests include the measuring of the ratio of luteinising hormone to the follicle stimulating hormone (which is altered in PCOS), and a separate measure of the circulating male hormone (androgen).
Both Dr Nolan and Dr Walsh emphasise that, even then, a correct diagnosis depends on putting together a picture from all test results and the clinical findings in each case.
However, because of the broad metabolic effects of insulin resistance, it is also important for doctors to measure cholesterol levels and to assess the woman's risk of heart disease and diabetes. For example, research has shown that patients with PCOS have a seven times greater chance of having a heart attack. Untreated PCOS patients have a 70 per cent chance of developing diabetes after the age of 40.
"PCOS is really important as a preventative medicine opportunity," Dr Nolan says. "It is a common condition and an important cause of infertility but also a risk factor for diabetes and heart disease." He is keen to carry out further research into the condition, with the emphasis on establishing the "genetic story" behind it.
The key to treatment is to improve insulin resistance. Once this is achieved, many of the symptoms of PCOS abate. A low fat, low glycaemic diet is important. Even losing between 3 and 5 per cent of body weight seems to make the body's tissues more sensitive to insulin.
Aerobic exercise is also a key to improving insulin performance and "switching off" the high levels of the hormone in the blood stream.
The oral diabetic drug, metformin, is also useful. Not alone does it lower insulin levels but it also inhibits the production of male hormones. It reduces obesity and has been shown to help to regulate menstruation. "It improves ovulation and pregnancy rates," according to Dr Walsh, who points out there is no evidence of foetal abnormalities with metformin.
There are also specific techniques for particular symptoms. Fertility drugs such as clomiphene citrate can help. A procedure called a PCO drill, in which an electric current is passed into the ovary via a needle inserted through the belly button, breaks the abnormal cycle in the ovary, regulates ovulation and can improve fertility rates by 60 per cent.
Excess body hair and acne are alleviated by the oral contraceptive pill, which can also regulate periods. By making sure the lining of the womb is not overstimulated, the pill can also help to reduce the elevated risk of womb cancer in women with PCOS.
Victoria Beckham helped to raise awareness of PCOS by her disclosure that she has the condition. When she was diagnosed with PCOS, her symptoms were irregular periods, acne and being overweight. The story of how Clodagh Fitzpatrick and Louise Caldwell met and set up PCOS Ireland is a tribute to the ability of the Internet to empower patients. Louise searched the Web for an explanation for her symptoms. This led her to the website of the American Polycystic Ovarian Syndrome Association (PCOSA). Clodagh had seen a magazine article on PCOS and also went to the Web for confirmation. The American association put them in touch with each other in March and offered help in the setting up of a patient support group in the Republic.
By May, they had set up a website to enrol members and spread information. There is now an online discussion group, where members answer questions and offer each other support. PCOS Ireland has also had a number of successful public meetings, including one addressed by Dr David Walsh. Emphasising that PCOS can be difficult to diagnose, he says: "Information is power. The whole process has been very liberating for patients and they are set to drive it forward".
PCOS Ireland: www.pcosireland.com Polycystic Ovary Syndrome is generally considered a syndrome rather than a disease because it manifests itself through a group of signs and symptoms that can occur in any combination.