Nay Acevedo, 23, knows the one thing in her life she would not wish upon anyone else. She recalls missing out on crucial parts of her teenage years and struggling with her day-to-day functioning because of excruciating period cramps, fatigue, anxiety, and other symptoms. 

“My family would say, yeah, that’s normal, you’re going to experience cramps and things like that,” Acevedo said. 

Obtaining a diagnosis for her condition was not a straightforward process. But at 14, during her hospitalization for another issue, doctors also found signs of Polycystic Ovary Syndrome (PCOS). While she knew how the condition manifested, there were still a lot of unanswered questions about treating it long-term, and what that would entail. 

When she first saw health influencers recommending unverified remedies for the condition on TikTok, Acevedo says she wasn’t surprised. “This happens because there still aren’t enough verified resources and credible support for people battling PCOS,” she says.

This dynamic is not uncommon. PCOS affects one in 10 women of reproductive age worldwide. It occurs when the ovaries produce an abnormal amount of androgens, which are male sex hormones, usually present in small amounts in women. Symptoms vary but often include enlarged, bulky ovaries with cysts, irregular and painful periods, weight gain, acne, crippling fatigue, and anxiety.

Despite its prevalence, PCOS research remains greatly underfunded, according to the National Library of Medicine. 

In late 2024, another study by the National Library of Medicine analyzed 325 TikTok videos related to PCOS. Researchers found that the content attracted considerable engagement but was “made by non-healthcare professionals who discussed treatment options with limited or no research.” In other words, the study concluded, the videos “provide low-quality information.” 

Besides videos focused on general advice, the app is also flooded with influencers that sell hormone-balancing teas, creams, and supplements to manage symptoms. For example, several health influencers on the app have endorsed the carnivore diet, which involves eating mainly meat and dairy, for PCOS. One TikToker who goes by Ally stated in a video that this helped her heal her acne, lose 40 pounds and that she “no longer qualified for a PCOS diagnosis” within six months of being on the diet. However, no scientific evidence confirms its long-term effectiveness. 

Cyntia Onuoha-Brown, an integrative fertility expert, cautions patients against this fad, claiming that it could do more harm than good. 

“These influencers never mention the concerns with nutrient deficiencies, the high saturated fat intake, or the strain on your kidneys from such a high protein load,” she said. 

Gianna Beasley, a certified dietician and content creator who has PCOS, said she would never recommend this diet. 

“When you go that route, you’re removing fruits, vegetables, and grains, which are major sources of fiber. Fiber is necessary for the regulation of hormones and blood sugar,” she said. “There’s nuance in everything, especially PCOS.” 

Creators on TikTok have also promoted the “Wild Yam Cream,” made from wild yam root extract. 

“I got my period back after not having it for 12 months, using the Wild Yam Cream,” said Emily, another TikToker, who spoke in one video while rubbing the cream on her belly. The video has tens of thousands of views. Another video of Emily recommending the same product has nearly 300,000 views.

Beasley, however, dismisses wild root as a credible remedy. She says she would be “very skeptical that enough of the cream could be absorbed through the skin to make any difference.” 

Onuoha-Brown echoes this sentiment of the wild yam cream’s effectiveness. “The only thing the wild yam cream does is moisturise you,” she said. 

This speaks to a core problem with TikTokers’ quick fixes for the disease—one-size-fits-all approaches to an inherently complex condition don’t work. “Every single body with PCOS is so different,” said Beasley. “What works for my body will not work for your body.” 

A condition so inherently complex and all-consuming has a way of making those who suffer feel helpless and desperately seeking a beacon of hope.

“As women with PCOS, we’ve been given very little traditional support to manage our disease. So we want answers, and we feel frantic,” said Beasley, explaining why these TikTok trends pick up steam. “Thus, we latch onto anything that feels promising.” 

But the conflicting unverified information online can also leave patients perplexed, mounting on the frustration. 

“I use TikTok a lot, but when it comes to PCOS, there are so many influencers giving out medical advice, and they don’t have any certification,” said Farjana Asha, a 30-year-old in New York who was diagnosed with PCOS at a young age. “It’s so confusing. Who do I listen to?”