Hear the words ‘polycystic ovary syndrome’ (PCOS) and most women immediately panic about their ability to have children, often presuming it’s code for infertility. A diagnosis of PCOS – a hormonal disorder that affects one in 10 women – may also cause worry about having a heightened risk of type 2 diabetes and heart disease.
While there is no cure for PCOS, there’s lots that can be done to manage the condition and reduce the risk of fertility problems. While some women need medical help, lifestyle modifications like weight loss and regular exercise are some of the most important aspects of managing PCOS successfully.
What is PCOS?
PCOS is a complex endocrine system disorder. Women with PCOS may have enlarged ovaries that contain small collections of fluid in each ovary, which are often called cysts. However, not all women who have PCOS have multiple cysts and not all women who have multiple cysts have PCOS.
In fact very few women have the same set of symptoms. These symptoms include infrequent or prolonged periods; excess hair growth; acne and darkened skin patches; and they may experience mood changes and sleep apnoea later in life.
So how is PCOS diagnosed?
“PCOS is a syndrome not a disease, so diagnosis isn’t the same as a disease where a blood test shows you’ve got it or you haven’t,” says Dr Stella Milsom, endocrinologist at Fertility Associates.
“A syndrome means you’ve got to meet a set of criteria, and these can change depending on where you are in the world.”
Milsom says the most widely accepted criteria is the Rotterdam consensus, which confirms a diagnosis when two of the following criteria are met: 12 or more follicles are visible on one ovary or the size of the ovaries is increased; the presence of high levels of male hormones or symptoms of male hormones such as excess hair growth or acne; and menstrual dysfunction such as absent periods or lack of ovulation. According to this consensus, up to 15 per cent of women of reproductive age are affected by PCOS.
A diagnosis of PCOS usually occurs during adolescence or later in life when fertility problems emerge.
“It’s very common to diagnose PCOS as part of fertility investigations, especially if women haven’t been that observant about the frequency of their periods,” says Professor Cindy Farquhar, New Zealand spokesperson for The Royal Australian and New Zealand College of Obstetricians and Gynaecologists and medical director at Fertility Plus.
“The other time is when you’re a teenager and your periods don’t settle into a regular pattern, or you’ve got increased hair growth or acne.”
Such is the difficulty of diagnosing PCOS that many women wait years for confirmation. A survey of women in 32 countries, by Monash University in Australia, found the diagnostic process took more than two years for a third of respondents. Unsurprisingly, nearly two in three women were unhappy with the time they waited and the number of health professionals they had to see before receiving a diagnosis.
Milsom says the condition is so complex, many women don’t realise they may have it until a daughter or sister is diagnosed.
“The amount of attention women pay to erratic periods, excess hair and general symptomatology is very variable,” she says.
“The degree of introspection, especially in the milder cases, is going to vary. I think there are many women in the community who have this condition who haven’t been diagnosed.”
What causes PCOS?
The cause of PCOS is currently unknown, but because up to 40 per cent of women also have an immediate female relative with the condition, genetics are thought to be a significant factor.
“There have been some really big gene studies quite recently and they’ve been able to pin down a few specific genes that seem to be associated with an increased risk of the condition,” says Dr Roisin Worsley, endocrinologist at women’s health organisation Jean Hailes. “They seem to be genes that are involved in signals between the brain and the ovaries, but we still don’t really know what’s going on.”
Experts have also identified a link between insulin resistance and PCOS. Up to 80 per cent of women with PCOS are insulin-resistant, which can lead to excessive hair growth and acne.
Curiously, women with PCOS are more likely to have a form of insulin resistance caused by genetics rather than the type associated with being overweight. However, being above a healthy weight worsens insulin resistance and the symptoms of PCOS – and some women find symptoms only appear when they are overweight.
“Let’s say you have PCOS and your friend who’s exactly the same weight and activity level as you doesn’t have PCOS – you will be more insulin resistant than she is,” says Milsom. “There’s something about that PCOS ovary that changes the way the body handles glucose.
“What’s more, if you have PCOS and you’re heavy and sedentary, you’ll be even more insulin resistant.
“When women put on weight we don’t know whether they necessarily develop PCOS or they exacerbate what was a very minor condition into something that becomes a symptomatic condition.”
Why does PCOS matter?
High levels of male hormones and high insulin levels can prevent ovulation, which can make it more difficult for women to conceive naturally, and the risk of mis-carriage also increases. But it’s important to note 60 per cent of women with PCOS become pregnant without medical help.
“Things like losing weight, being fit and stopping smoking can increase the chance of getting pregnant,” says Worsley. “It’s very hard when you’re in your early 20s and you’ve got this condition and learn you may have trouble getting pregnant, but it’s more hopeful than that. We know women with PCOS end up having the same number of babies as women without PCOS.”
Milsom agrees: “On the fertility front, about 15 per cent of women are going to have some delay achieving fertility. Now, that rate in the overall PCOS population, it’s actually not different.
"So taken overall, having PCOS doesn’t mean you’re going to be infertile, but within that PCOS group of women there are going to be some women who ovulate reasonably readily or will ovulate with some lifestyle changes, and there are going to be some women who have more difficulty with ovulation.”
If lifestyle changes and weight loss haven’t helped, Worsley says simple fertility treatments like tablet medications will help many women. A very small number of women may need to have more invasive therapies like surgery or IVF.
Because hormones are complicated, women with PCOS are also at risk of type 2 diabetes and heart disease – thanks to an increased risk of high blood pressure, high cholesterol, obesity and high fasting blood glucose.
“PCOS is associated with diabetes and diabetes is associated with heart disease so they are all linked,” says Farquhar.
“It’s generally a particular concern for women who have other risk factors such as being overweight.”
Having infrequent periods may also increase the risk of endometrial cancer.
“I feel comfortable with a period that’s six weekly or more frequent but if it’s less frequent than that, there’s a risk that all the oestrogen coming from the follicles will thicken up the lining of the womb,” says Milsom.
“That thickening can lead to precancerous changes. While a woman may present because of fertility or hair or skin issues, she shouldn’t ignore infrequent or absent periods.”
What can be done to help?
Achieving a healthy weight through a nutritious, balanced diet and regular exercise is one of the most effective ways to reduce the severity of many symptoms and reduce the risk of type 2 diabetes and heart disease.
“The first thing we consider is body mass index (BMI) and trying to get women into a healthy range,” says Cindy Farquhar. “Many women who have PCOS are overweight, and if they lose weight the frequency of their periods might improve, they may go back to having a regular menstrual cycle and their skin might improve as well. Even losing as little as 8kg might help.
“The reason for that is having a high BMI is literally like pouring fat onto the fire because your fat cells overproduce hormones that will make the condition worse. If you can reduce the number of fat cells and the size of your fat cells by losing weight, you will reduce the driver for the underlying problems.”
In addition to lifestyle changes, medications and hormonal treatments like the contraceptive pill and anti-androgen therapy may be prescribed to manage excess hair growth, acne and to help regulate the menstrual cycle.
Ultimately, even though a PCOS diagnosis may sound scary, medical knowledge is very high and health professionals are well-versed in effective treatment strategies.
“I don’t want women to get alarmed and worried about it,” says Milsom.
“Think of it like having a bad family history for diabetes or heart disease. Take care of your health – stay fit, stay lean and don’t take up smoking – and get screenings for blood pressure, cholesterol and diabetes so you don’t exacerbate that pre-existing risk.”
Words: Angela Tufvesson