Polycystic ovary syndrome (PCOS): how do you know you have it?

Health agenda
Fertility and IVF

Polycystic ovary syndrome (PCOS): How do you know you have it?

Published February 2020 | 4 min read
Expert contributors Helena Teede, professor of women’s health, Monash University and Dr Sonia Davison, endocrinologist, Jean Hailes for Women’s Health
Words by Angela Tufvesson

PCOS is a complicated condition that’s difficult to diagnose. So, what are the PCOS symptoms and what are some methods to treat it? Discover how lifestyle changes can make a big difference to your long-term health and wellbeing.

Weight gain. Acne. Irregular periods. Fertility troubles. Excess facial or body hair. These are some of the most common symptoms of polycystic ovary syndrome (PCOS), a complex hormonal condition that affects between eight to 13% of women* of reproductive age.

PCOS can be tricky to diagnose, and while there’s no known cure, the good news is there’s a lot that can be done to manage symptoms.

What is PCOS?

Ovaries contain follicles, in which eggs develop. Normally only two to five follicles develop at the one time, scattered throughout the ovary.

A woman is diagnosed with polycystic ovaries if she has a larger number of follicles – or cysts – developing at the same time (‘polycystic’ literally means ‘many cysts’). These partially formed follicles rarely grow to maturity or produce eggs that can be fertilised.

Polycystic ovaries are larger than normal ovaries and have a slightly different appearance.

What causes PCOS?

The exact cause isn’t fully understood. Helena Teede, a professor of women’s health at Monash University, says a combination of genetic, hormonal and environmental factors are believed to play a part in PCOS.

“If you've got PCOS in your family, it’s very highly inherited, and it’s also caused by a hormonal environment in the uterus that has excess male hormones and other ovarian hormones,” she says.

There’s also a connection between insulin resistance – a condition where your body produces more insulin than usual – and PCOS. Insulin resistance is present in up to 80% of women with PCOS. It’s believed high levels of insulin affect how the ovaries work, which triggers the symptoms.  

And then there’s weight gain, a common PCOS symptom that also worsens insulin resistance. “High insulin causes weight gain, and problems with weight gain cause high insulin, so it’s a bit of a vicious cycle,” says Prof Teede.

How is PCOS diagnosed?

PCOS is diagnosed when two of the three following criteria are met:

  • The ovaries are ‘polycystic’ – medical scans show there are multiple follicles accumulated in the ovaries, or the size of the ovaries has increased.
  • There are high levels or symptoms of high levels of male hormones.
  • There are problems with periods, such as irregularity or lack of ovulation.

PCOS is difficult to diagnose because symptoms can vary dramatically. Multiple cysts on the ovaries (as shown by a scan), may not always indicate a diagnosis of PCOS. Blood tests are typically used to understand more about any potential high hormone levels.

What are the first signs of PCOS?

Signs of PCOS vary between women, says endocrinologist Dr Sonia Davison from Jean Hailes for Women’s Health. “Not everyone has the same presentation – for example, some women may have mostly regular periods, but have acne and excess hair growth and not be overweight,” she says. “Others may be overweight, never have periods and have scalp hair thinning.”

PCOS and your health

Never heard of PCOS? You’re certainly not alone. Awareness of the condition remains low, so much so that research suggests as many as 70% of women with PCOS remain undiagnosed.

Professor Teede says PCOS usually appears in adolescence, but women who are diagnosed don’t typically receive a diagnosis until much later in life.

“Most adolescents are actually missed – they’re put on the oral contraceptive pill and they don’t find out they’ve got it until their late 20s or early 30s when they want to have children,” she says.

Receiving a diagnosis later in life matters because PCOS is associated with increased risk factors of type 2 diabetes, high cholesterol and cardiovascular disease, as well as a greater chance of fertility challenges because of problems with the menstrual cycle.

There’s also evidence that PCOS can affect mental health. A recent study co-authored by Prof Teede found women with PCOS are more likely than women without the condition to experience low self-esteem, psychological distress and eating disorders.

Treating PCOS symptoms

Prof Teede says education and empowerment are the most important forms of PCOS treatment. “If you understand the condition, you can have some influence over it,” she says. “If you don’t understand the condition, it’s something that happens to you.”

Lifestyle changes are also important, especially when it comes to dealing with weight gain. “If weight excess is a problem, even 5 to 10% weight loss can improve ovarian function and have an impact on symptoms,” says Dr Davison.

Other forms of treatment for PCOS include medications and hormonal treatments such as the contraceptive pill and anti-androgen therapy (androgen is a steroid hormone) to manage excess hair growth, acne and to help regulate the menstrual cycle.

Managing the symptoms of PCOS helps to reduce the risk of long-term health problems. And when it comes to fertility, Prof Teede says problems falling pregnant are treatable for most women with the condition. “Sometimes lifestyle changes and a small degree of weight loss is all that’s needed, sometimes it’s medication and rarely is it IVF,” she says.

Want to know more about PCOS? Download Monash University’s AskPCOS app, an evidence-based resource developed by leading PCOS experts from around the world.

If you are experiencing depression or need to talk to someone now, call Lifeline on 13 11 14.

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IMPORTANT INFORMATION

* HCF acknowledges individuals in the transgender community and people who are non-binary and living with PCOS who may not identify as women.

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