Beware the PCOS 'cure' trap on social media!
Have you ever stumbled upon a 'miracle cure' for PCOS on your social media feed? It's a common trap, but one that could lead you down a misleading path. Catherine Baars, a 24-year-old from Naarm/Melbourne, knows this all too well. She was diagnosed with PCOS at 19 and has since become incredibly frustrated by the abundance of misleading information online.
"It's so easy to find advice on managing, treating, and even 'curing' PCOS online, but the truth is, a personalized approach is usually what's needed," says Pav Nanayakkara, an associate professor and minimally invasive gynecological surgeon from Jean Hailes for Women's Health.
About 10-15% of women (or those assigned female at birth) live with PCOS, and their symptoms and experiences can vary greatly. "This is where misinformation becomes a challenge," explains Dr. Nanayakkara. "PCOS presents differently for each person, making it crucial to seek personalized advice."
What is PCOS?
PCOS, or Polycystic Ovary Syndrome, is associated with increased levels of insulin and androgens (male-type hormones). Symptoms can range from excessive hair growth and acne to irregular periods, weight gain, and difficulty conceiving. It can also increase the risk of developing other conditions like diabetes and heart disease.
Common PCOS Myths
Dr. Nanayakkara highlights common misconceptions about PCOS, including the belief that being overweight causes PCOS or that it's a self-inflicted condition due to poor self-care. There's also misinformation surrounding specific supplements and PCOS-targeted diets.
"This misinformation can lead to feelings of shame and anxiety, preventing people from seeking the support they need," she says.
The connection between fertility and PCOS is also often misunderstood. Some believe that women with PCOS can't conceive, but this is not always the case. Dr. Nanayakkara shares stories of patients who, after being told they couldn't conceive, found themselves with an unplanned pregnancy.
The Dangers of Online Diet Advice
Catherine's experience with online diet advice is a cautionary tale. In her early twenties, she stumbled upon a strict diet plan on social media, promising to manage PCOS. She followed a restrictive, low-calorie ketogenic diet for eight months, but it negatively impacted her energy levels and overall quality of life.
"It just wasn't sustainable," she says.
Now, Catherine follows a more personalized diet, guided by experts like her endocrinologist, who promotes a "diabetic-friendly" approach. She has a better understanding of how sugar, carbs, and calories impact her lifestyle and symptoms.
Romy Brown, at 27, also sought help on Instagram, worried about PCOS's impact on her fertility. One common suggestion was to go dairy and gluten-free.
"It was depressing to give up milk and dairy, but I felt desperate and tried anything I saw," she says.
It took Romy two years, lots of reading, and consulting with professionals to realize this approach wasn't right for her. Now, at 33, she administers a Facebook support group for those navigating PCOS.
"There's No One-Size-Fits-All Diet for PCOS"
Lora Attia, a dietitian specializing in fertility and PCOS nutrition, sees patients who have tried various supplements and diets marketed for PCOS. They often feel fatigued and discouraged.
"Every woman with PCOS has unique symptoms. What works for one person online might not make someone else feel better," Ms. Attia explains.
She cautions against cutting out major food groups, as women with PCOS are more susceptible to disordered eating and poor body image. Restrictive eating can worsen insulin resistance, making it harder to manage symptoms.
For those with acne, reviewing dairy intake and considering calcium-rich alternatives might be beneficial. However, Ms. Attia emphasizes that dairy is nutritious and doesn't need to be eliminated. Full-fat dairy can even support ovulation.
While reducing carbohydrates may help women with insulin resistance or diabetes, it doesn't mean cutting them out entirely. The focus should be on fiber-rich, complex carbs to support blood sugar control. Research suggests that the DASH and Mediterranean-style diets may improve PCOS symptoms more effectively than a low-carb approach alone.
These diets prioritize food quality over elimination, supporting insulin sensitivity, gut and liver health, and reducing chronic inflammation.
Filtering Out the Nonsense
Dr. Nanayakkara advises actively seeking reliable information from trusted sources like Jean Hailes or the Royal Women's Hospital.
"Check the credentials of those making claims. It's not always about the influencer with the most followers when it comes to medical advice," she says.
Ms. Attia suggests utilizing subsidized dietician services available in Australia for those diagnosed with PCOS. She also recommends the free AskPCOS app or webpage.
Catherine believes that being better informed and receiving personalized medical advice has helped her navigate the sea of misinformation online.
"The amount of misinformation is slowly improving, and I follow a few very good registered dieticians on social media," she adds.
For Romy, it's all about education.
"PCOS is not a one-size-fits-all condition. It can't be confined to a simple formula."
Final Thoughts
While social media can be a great source of support and information, it's crucial to approach PCOS advice with caution. Seek personalized guidance from experts and trusted sources to ensure you're getting the right support for your unique needs.
Have you encountered any misleading PCOS advice online? What steps have you taken to find reliable information? Share your experiences and thoughts in the comments!
