Affecting 8-13% of Australian women of reproductive age, PCOS isn't a new or rare condition, yet some doctors still don’t recognise it . So, why the lag?
The truth is that no 2 women experience PCOS the same way, which can make it difficult not only to understand but to identify.
In fact, it’s estimated that 70% of women aren't aware that they have PCOS, with stats in The Journal of Clinical Endocrinology & Metabolism showing an average delay of 2 years to diagnosis .
However, thanks to experts who dedicate their careers to studying this condition, there are things we do know about PCOS — and that you should know too. Let's dive into it.
What is PCOS?
PCOS is an endocrine disorder where levels of testosterone and oestrogen are imbalanced and it is often associated with insulin resistance, causing a domino effect of health symptoms.
While women all produce small amounts of testosterone, above-average levels can affect your menstrual cycle and often prevent ovulation.
One of the reasons why PCOS is so difficult to diagnose is that it isn’t a “one-size-fits-all” condition. It affects each individual differently.
The name itself — polycystic ovarian syndrome — is quite misleading. Although it implies that there are multiple cysts on the ovaries, what appear to be cysts are actually small follicles that each contain an egg.
What are the symptoms?
PCOS symptoms can be both mental and physical and are caused by high levels of androgens, aka “male” hormones or testosterone, which can be measured through blood tests.
While we know that not all women experience PCOS the same way, some of the most common symptoms include:
- Thinning hair and scalp hair loss (alopecia)
- Excess face and body hair growth (hirsutism)
- Acne on the face or body
- Infrequent and irregular menstrual periods
- Weight gain
- Insulin resistance
- Difficulty becoming pregnant
- Pregnancy complications
- Mood changes
- Sleep apnoea
- Issues with self-image
PCOS is actually the primary cause of infertility in Australia, with Monash University reporting that 70% of women with the condition struggle to fall pregnant .
Although most achieve their desired family size, it is important to note that strategic planning and professional assistance are often necessary.
How is PCOS diagnosed?
Professor Helena Teede, co-director of the National Health and Medical Research Council Centre for Research Excellence in PCOS, explains that obtaining a timely diagnosis is challenging for women, “with many experiencing significant delays with multiple different doctors involved” .
This challenge is what led Professor Teede to create the Australian-led PCOS guidelines, a world-first that will help cover diagnosis, screening, and risk, using evidence-based science and setting a clear standard and benchmark for the first time.
Thanks to Teede’s work, PCOS diagnosis will include screening for metabolic complications including an analysis of ovulatory function.
She also 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, which in the past has led to inaccurate identification and misdiagnosis.
What is PCOS caused by?
To date, the exact cause of PCOS is unknown, although research has shown key links between insulin resistance and lifestyle . Those with immediate female relatives with the condition also have a 35-50% increased chance of PCOS .
This lack of knowledge about what causes PCOS doesn't help when it comes to reaching a diagnosis.
In an interview with Kin, 26-year-old Laura* explained that it took over 8 years to get an official diagnosis.
After experiencing irregular periods, acne, and bouts of anxiety and depression, Laura visited her doctor in 2012 for answers that she didn't receive until earlier this year.
Throughout this time, Laura visited 3 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.
How is PCOS treated?
Managing PCOS is not a one-size-fits-all approach.
Generally speaking, Dr Peric said the best way to manage PCOS is with a healthy lifestyle and by maintaining a normal weight range, as “it will help those who have irregular periods to potentially keep cycles regular.”
If you live with PCOS, consider as well:
- Taking hormonal birth control, like the contraceptive pill. This can help keep acne and unwanted hair growth under control
- Eating a diet that is high in fibre. The right diet can lower insulin resistance (and Kin's Daily Digestive, a 4-in-1 supplement with pre and probiotics, fibre, and digestive enzymes, can also help here)
- Moving your body regularly. Exercise can make you feel better emotionally and physically, but it doesn't stop there. It also helps regulate your menstrual cycles, restore your ovulation, and reduce testosterone
- If you're overweight, getting professional support. A program like Juniper's Weight Reset Program can help you get rid of what is known as 'PCOS belly', through medication, health coaching, and regular 1-on-1 check-ins with a health practitioner
As women with PCOS have an increased risk of anxiety and depression, it is important to be aware of your emotional well-being, check in with friends regularly, and seek professional help if necessary.
Staying on top of your physical health is just as crucial, as PCOS can increase the chances of high blood pressure, high cholesterol, and type 2 diabetes. For women who don't have their periods for over 3 years (or have very irregular ones), the risk of endometrial cancer is also higher.
While, at a glance, PCOS can seem overwhelming and scary, it is manageable when diagnosed early and treated properly.
Our in-depth guide to managing PCOS goes into more detail about lifestyle changes and treatment options for the condition, so make sure to give it a read.
If you are experiencing any of the symptoms listed above, or are concerned about your health, please contact a doctor for assistance. If you’re unhappy with your consultation, don't hesitate to seek a second opinion.