Polycystic Ovary Syndrome affects 8-13 per cent of Australian women at reproductive age. But still, some doctors don’t recognise the condition today. Why the lag? No two women experience polycystic ovary syndrome the same way – which can make it difficult to pinpoint.
While investigation is ongoing, researchers have linked PCOS with infertility, diabetes, anxiety and pregnancy complications (to name a few). On top of that, it’s estimated that 70 per cent of women are not even aware that they have PCOS with stats in The Journal of Clinical and Endocrinology & Metabolism showing an average delay of two-years to diagnosis. So what is PCOS? Here’s everything you need to know.
PCOS is an endocrine disorder where levels of testosterone and estrogen are imbalanced and often associated with insulin resistance, causing a domino effect of health symptoms.
While women all produce small amounts of testosterone (androgens), above average levels can affect your menstrual cycle and often prevent ovulation. One of the reasons why PCOS is so difficult to diagnose is because it isn’t a “one-size-fits-all” condition, it affects each individual differently.
The name Polycystic Ovarian Syndrome is also quite misleading. Although PCOS implies that there are multiple cysts on the ovaries, what appears to be cysts are actually small follicles that each contain an egg.
The symptoms of PCOS can be both mental and physical and are caused by high levels of androgens, aka “male” hormones, most commonly known as testosterone. Here are some of the most common symptoms of PCOS, but remember that not all women present with the same symptoms:
• Scalp hair loss (alopecia)
• Excess hair (hirsutism)
• Acne on face or body
• Irregular and infrequent periods
• Weight gain
• Insulin resistance
• Difficulty becoming pregnant
• Pregnancy complications
• Mood changes
• Sleep apnoea
• Issues with self image
PCOS is the primary cause of infertility in Australia, with Monash University reporting that 70 per cent of women with PCOS struggle to fall pregnant. While most women with PCOS achieve their desired family size, it is important to note that strategic planning and professional assistance is often necessary.
Professor Helena Teede, co-director of the National Health and Medical Research Council Centre for Research Excellence in PCOS, explains that obtaining a timely PCOS diagnosis is challenging for women, “with many experiencing significant delays with multiple different doctors involved.”
This challenge is what led Dr Teede to create the Australian-led PCOS guidelines, a world-first that will help cover diagnosis, screening, and risk, using evidence based science, setting a clear standard and benchmark for the first time.
Thanks to Professor Teede’s work, diagnosis will include screening for metabolic complications including an analysis of ovulatory function. Teede tells Kin that, owing to the overlap with normal ovarian physiology, ultrasounds should no longer be used as a tool for diagnosis. This is because the identifying factor that an ultrasound is looking for can occur in normal healthy ovulation. Teede’s guidelines explain that ultrasound examination of the ovaries is not recommended, as in the past they have led to inaccurate identification and misdiagnosis.
To date, the exact cause of PCOS is not known, although research has shown key links with insulin resistance and lifestyle. Those with immediate female relatives with PCOS also have up to a 35-50% increased chance of PCOS.
In an interview with Kin, 26-year-old Laura* explained that it took over eight years for an official diagnosis. After experiencing irregular periods, acne, and bouts of anxiety and depression, Laura visited her doctor in 2012 for answers but didn’t receive a diagnosis until earlier this year. Throughout this time Laura visited three different doctors, with one ruling out PCOS without a test as she “wasn’t overweight and didn’t have excessive hair growth.”
Earlier this year, Laura visited a specialist and was officially diagnosed with PCOS. “We did the tests again and lo and behold I had more than 20 follicles on one ovary,” she said.
Laura is now starting a treatment plan and is also being assessed for endometriosis, but her story is just one example of the lengths women have to go to in order to identify their chronic conditions.
Managing PCOS is not a one size fits all approach. We spoke with Dr Helen Peric, a women’s health and fertility specialist, who explained that treatments will need to be added in depending on their symptoms, such as hirsutism and irregular cycles.”
Generally speaking, Dr Peric said the best way to manage PCOS is with a healthy lifestyle and to maintain a normal weight range. “It will help those who have irregular periods to potentially keep cycles regular.”
As women with PCOS have a significant risk of anxiety and depression it is important to be aware of your emotional wellbeing, check in with friends regularly, and seek professional help if necessary.
While at a glance polycystic ovary syndrome can seem overwhelming and scary, it is manageable when diagnosed early and treated properly. If you are experiencing any of the symptoms above, or are concerned about your health, please contact a doctor for assistance. If you’re unhappy with your consultation seek a second opinion.