Like many people after receiving a diagnosis of polycystic ovary syndrome (PCOS), Mia*, age 25, was left with more questions than answers. She recalls being provided with “very little information” about the condition, aside from her doctor’s instruction to “watch what you eat” and an offer for a prescription for birth control, which she took up. As she puts it, “It all felt so vague”.
Mia began to search for answers on platforms like TikTok, Instagram and Reddit. She was met with an overwhelming amount of content: on TikTok, the ‘PCOS’ hashtag has 5.7 billion views at the time of writing; on Instagram, there are 4.1 million posts tagged with ‘PCOS’, while the r/PCOS subreddit has around 123,000 members. At first, it felt like a relief: “As soon as I went online in search of PCOS communities, I found out so much good information that my doctor failed to share.”
But it wasn’t long before she found herself bombarded with misinformation – such as PCOS influencers claiming to have “reversed” or “healed” the condition (PCOS cannot be cured, but symptoms can be managed). “I know now these are insane claims that just aren’t medically possible,” Mia says, “but how was I to know at the time?”
PCOS is a condition characterised by higher levels of androgens (hormones that contribute to growth) that affects how the ovaries work and can often impact insulin resistance. Common symptoms include irregular periods, acne or oily skin, hair loss, excessive hair growth (such as on the face or chest), weight gain and difficulty getting pregnant. Despite the syndrome’s prevalence and known links with diabetes, cardiovascular disease and certain types of cancer, research on the condition is underfunded – as is usually the case with women’s healthcare. For transmasculine people with PCOS, the problem is even worse, with the resources available typically failing to account for the experiences of anyone who isn’t a cis woman.
The lack of scientific research has created a vacuum that self-professed PCOS ‘experts’ have sought to fill online. As Mia’s experience shows, there is a huge amount of useful information. According to one Australian medical journal, it is estimated that up to 70% of women with PCOS are undiagnosed, so viral videos helping people recognise their symptoms and seek out a diagnosis can be life-changing for some. But there is also a deluge of false or misleading information circulating online, and people looking to capitalise on the lack of knowledge surrounding PCOS.
On apps like TikTok, PCOS influencers typically focus on weight loss, such as “What I Eat In a Day with PCOS (for weight loss)” videos, or workouts and diet plans for people with the condition. Mia says she frequently came across content “heavily promoting low-carb diets”, such as the keto diet. “A lot of the influencers I followed would promote this as the only diet that would help people with PCOS lose weight,” she says.
Rohini Bajekal, a nutritionist and author of Living PCOS Free: How to regain your hormonal health with Polycystic Ovary Syndrome, is concerned about the rapid spread of misinformation online. “Having a low carbohydrate diet has been shown to actually increase risk of early mortality, and the risk of chronic diseases, which people with PCOS are already more vulnerable to,” she explains. Rohini adds that while “there’s no one diet that is going to cure or solve your PCOS”, one study has found that plant-based diets are generally more proven to alleviate symptoms as shown in this University of South Carolina study. So, the suggestion that people should be opting for the keto diet is concerning, given that diets high in animal protein can potentially increase inflammation.
The major concern is how this type of messaging could lead to eating disorders, which PCOS sufferers are already more vulnerable to developing. Mia says that when she went on the keto diet following the advice of PCOS influencers, it led to unhealthy eating patterns. “I had tried a few times but only lasted weeks, if not days, before I would give up and binge all the foods I had been restricting myself from,” she recalls. “It made me feel more hopeless, like developing PCOS was my fault, and that I’m not mentally strong enough to stay on a keto diet to lose the weight I had gained.”
“[The keto diet] made me feel more hopeless, like developing PCOS was my fault, and that I’m not mentally strong enough to stay on a keto diet to lose the weight I had gained.”
According to Rohini, this is a common occurrence. “Going on these keto fad diets can often trigger eating disorders,” she says. “Many people don’t actually realise that PCOS is connected to eating disorders […] there are real mental health issues [associated with PCOS] that just aren't talked about.” (21% of people with PCOS have an eating disorder, compared to 4% of those without PCOS). The almost exclusive focus on weight loss by PCOS influencers and other content creators also overlooks the other symptoms of the condition, and the fact that not all people diagnosed with PCOS are “overweight” – nor do they necessarily want to lose weight. In fact, about 20% of women with PCOS have a weight and waist circumference that falls within a “healthy” range.
While there is evidence showing that losing just five pounds of body weight can improve a person’s symptoms, prescribing weight loss isn’t always the most helpful way to treat the condition. It’s unsurprising, though, that on TikTok – where diet culture is rampant – this is the content people searching for PCOS are more likely to be served. Things like managing sleep or stress levels – which can also help to alleviate symptoms – are given far less attention.
In advocating for ‘curing’ or managing PCOS via lifestyle changes alone, there is a common tendency among influencers to demonise medications used to treat the condition, such as metformin, which is often used to treat diabetes, or birth control. There are TikTok viral videos showing people ‘before and after’ taking birth control on PCOS to ‘prove’ that it causes weight gain, rejecting the pill in favour of a “gluten-free diet”, or claiming that supplements are more effective than metformin. Mirroring anti-vaxx sentiment, the emphasis is on treating the condition “naturally”.
Phoebe*, age 24, says that when her doctor offered her metformin for PCOS, she was initially reluctant because of the content she’d consumed on TikTok. “There’s a big push from influencers to control your PCOS *only* with diet and supplements, and a lot of that push is focused on weight loss,” she says. “It left me feeling like I was taking the ‘easy way out’ by choosing the route of medication.” Like Mia, Phoebe describes being made to feel guilty for not making the lifestyle changes advocated by PCOS influencers that could ‘cure’ her condition. “It’s implied that your symptoms and PCOS are because you’re not trying hard enough.”
When it comes to the reams of PCOS influencers pushing supplements like Inositol, there is good reason to be suspicious. Rohini says that while Inositol is “a really promising supplement”, there has been no large-scale study proving its effectiveness for people with PCOS.
“Not everyone can manage their symptoms of PCOS with just lifestyle,” says Rohini. “Some people also need medication like, for example, metformin or the birth control pill, which can really change their quality of life.” She adds that while the pill isn’t going to suit everyone, it’s “the most useful of all medical treatments for PCOS because it helps manage the excess of androgens, which leads to excess hair growth, acne and menstrual disorders”. The same applies for people with PCOS trying to fall pregnant, which can’t always be achieved through lifestyle changes alone. “A lot of women with PCOS will need assisted reproductive technology,” says Rohini.
When it comes to the reams of PCOS influencers pushing supplements like Inositol, there is good reason to be suspicious. Rohini says that while Inositol is “a really promising supplement”, there has been no large-scale study proving its effectiveness for people with PCOS. “We can't recommend supplements without that clear research – these supplements can be expensive, and some carry health risks.”
The type of content more likely to go viral shows people claiming dramatic results from, for example, taking supplements like Inositol, leaving little room for nuance. It’s bound to leave people seeking out this kind of content disappointed, as is the claim that PCOS can be ‘healed’ by lifestyle changes. The reality is, as Rohini puts it, “We’re always trying to look for some kind of quick fix, but there isn't one single thing that's going to ‘heal your PCOS’. It's really about finding a longer term solution to managing it.”
Gender inequality in healthcare runs deep, leaving women misunderstood and undiagnosed. It’s within this context that PCOS influencers have been able to control the narrative around the condition. Supporting the work of organisations such as Verity and Daisy PCOS in the UK, and the PCOS Awareness Association in the US, along with campaign such as PCOS Awareness Month, will be vital in ensuring further research is done into the condition. Until we address the systemic factors holding back women’s healthcare, misinformation will continue to run rife online.
*Names have been changed to protect identities