Catherine Baars gets incredibly frustrated scrolling through social media posts on "reversing" or "curing" polycystic ovary syndrome (PCOS).
"I don't know if they're purposefully trying to mislead people or if they're just trying to make themselves feel better," says the 24-year-old from Naarm/Melbourne, who was diagnosed at 19.
Advice on how to "manage", "treat" and "heal" PCOS is easy to come by online, but experts say a more personalised approach is usually what's needed.
About 10-15 per cent of women (or those assigned female at birth) live with PCOS and their symptoms and experiences can vastly differ, says Pav Nanayakkara, an associate professor and minimally invasive gynaecological surgeon from Jean Hailes for Women's Health.
"That," she explains, "makes misinformation and disinformation a lot more challenging to deal with, because there is that spectrum in how it can present."
Firstly, what is PCOS?
According to Jean Hailes for Women's Health, PCOS is associated with increased levels of insulin and androgens (male-type hormones).
Symptoms can include excessive hair growth, acne, irregular periods, weight gain, difficulty falling pregnant and anxiety and depression.
Having PCOS can also increase your risk of developing other conditions, including diabetes and heart disease.
Common PCOS myths
Dr Nanayakkara says there are common misconceptions about weight, diets and fertility when it comes to PCOS.
"A lot of people think that being overweight causes PCOS or that it's something that the patient brings on themselves by poor self-care, not eating the right things, [or] not exercising."
She says there is also misinformation around certain supplements or PCOS-specific diets.
"That misinformation can lead to feelings of shame and anxiety and not wanting to come forward or seek help to get the adequate support you need."
The connection between fertility and PCOS is also often misunderstood.
"There is a little bit of misinformation around people with [PCOS] never being able to have kids. Unfortunately, we have had a few patients that have come in [after] being told from previous health practitioners or reading that [they couldn't conceive] and then coming in with an unplanned pregnancy."
Dr Nanayakkara says she would be "very wary" of any advice or product advertisement that mentions curing, solving or reversing PCOS, given it's a lifelong condition.
The dangers of online diet advice
In her earlier twenties, Catherine came across advice, on social media, around using a strict diet to manage PCOS.
She says she followed a very restrictive, low-calorie ketogenic diet for about 8 months.
"It definitely negatively impacted my energy levels," she says.
The diet came at the detriment of not only her energy, but also friendships and general quality of life. Ultimately, she says, it just wasn't sustainable.
Her diet is more personalised these days and informed by the advice of experts including her endocrinologist, who promotes a "more diabetic-friendly diet".
She says she has a better understanding of the impact of sugar, carbs and calories on her lifestyle and symptoms now.
When Romy Brown was about 27, she started to worry about the potential impact of PCOS on her fertility.
As a result, she went looking for help on Instagram. One of the most common suggestions was to go completely dairy and gluten free.
It was advice she initially followed.
"It was really kind of depressing for me to get rid of milk and … dairy and gluten, because I like a good piece of bread."
She says it can be hard to navigate online advice.
"You're just so desperate that you just try anything that you can see anyone doing."
She says it took her two years, a lot of reading, and finding dieticians and other professionals that work in the space to realise it really wasn't the right approach for her.
At 33, Romy is now the admin of a Facebook support group for those navigating the condition.
'There is no one best diet'
By the time patients comes to see Lora Attia — a dietitian specialising in fertility and PCOS nutrition — they have often tried a range of supplements marketed for PCOS, have diet fatigue and are "feeling pretty lousy".
Ms Attia says what works for someone online isn't necessarily going to make someone else with the condition feel better.
"We have to recognise that every woman with PCOS will have their own individual symptoms."
"There is no one best diet for PCOS."
Ms Attia says one of the common pieces of advice people find is around cutting out major food groups.
"But, what we know is women with PCOS are more susceptible to disordered eating [and] to have poor relationships with their bodies."
And because PCOS often comes with insulin resistance, restrictive eating or skipping meals can make it even harder to eat well and address the symptoms, she adds.
For example, for those with PCOS experiencing symptoms such as acne, there may be benefits to reviewing dairy intake — particularly milk — and considering calcium-rich alternatives, Ms Attia says.
“If someone is struggling with acne, we look at the overall quality of their diet and make small, targeted adjustments, this may include dairy choices where appropriate."
But she emphasises that dairy is nutritious, doesn’t need to be eliminated and full-fat dairy can also support ovulation.
While reducing carbohydrates may be helpful for women with insulin resistance or diabetes, this does not mean cutting them out, Ms Attia says.
“The focus is on fibre-rich, complex carbohydrates to support blood sugar control.
“[And,] research shows the DASH and Mediterranean-style diets may improve PCOS symptoms more than a lower-carbohydrate approach alone.”
These diets emphasise food quality rather than elimination, while supporting insulin sensitivity, gut and liver health, and reducing chronic inflammation, Ms Attia explains.
“These are tools in the toolbox.”
'Filter out the nonsense stuff'
Actively looking for reliable information from sources such as Jean Hailes or the Royal Women's Hospital can help you avoid some of the PCOS myths and confusing advice, Dr Nanayakkara says.
"Look at the credentials of who is making those claims. It's not necessarily the influencer with the highest number of followers if you want reliable medical information."
Ms Attia says when you're diagnosed with PCOS in Australia you may be eligible to see a subsidised dietician.
She also suggests checking out the free AskPCOS app or webpage.
Catherine says being better informed and having received personalised medical advice has helped her "filter out the nonsense stuff" she comes across.
She believes the amount of misinformation online is slowly improving and follows a few "very good" registered dieticians on social media.
For Romy, it comes back to education around the condition.
"PCOS can't be confined to this little square of, 'you have PCOS, you have to do XYZ'."
This article contains general information only. You should consider obtaining independent professional advice in relation to your particular circumstances.
