Online diagnosis fuels PCOS claims as healthcare gaps deepen

A growing number of young people are turning to social media, search engines, and online communities to interpret symptoms they believe are linked to Polycystic Ovary Syndrome, fuelling a culture of self-diagnosis, misinformation, and self-medication, writes FAVOUR ABALAKA

Twenty-year-old Rachel Nzeh was scrolling through TikTok one day when a video on the “For You” section of the app caught her attention.

The English Education graduate said the clip featured a woman speaking in a calm, almost conversational tone about Polycystic Ovary Syndrome.

“It was a breakdown of symptoms and a glimpse into lived experience,” Nzeh said.

Within days, she noticed a shift in her algorithm. Her feed became filled with PCOS-related content, women sharing stories of sudden weight gain, irregular menstrual cycles, infertility concerns, facial hair growth, and other hormonal symptoms.

“I started noticing things about my body I hadn’t paid attention to before,” she told Sunday PUNCH.

Nzeh said the online conversations consistently circled around fertility, which fuelled her fear that PCOS could affect her ability to have children in the future.

“That was my biggest fear. I kept thinking, what if I don’t fix it now, I’ll have to deal with it later,” she quipped.

Nzeh explained that she had begun to experience sudden weight gain and chin hair growth, which seemed to align with what she was seeing online.

According to her, she did not question the content; she accepted it as a self-diagnosis of PCOS.

Nzeh said that early in her third year at the university, a vendor convinced her that his herbal products could suppress symptoms and even “heal” the condition.

“I remember my roommate and I contributing money to buy it. They didn’t even have symptoms, but it felt like something to prevent,” she recalled.

At first, she said, the changes seemed encouraging. But soon after, her body began reacting unexpectedly.

“I was purging,” she said. “Then I started purging blood.”

Alarmed, she contacted the seller, who reassured her that it was a sign the product was working. Trusting this explanation, she continued using it.

However, her condition worsened. Her skin became dull and dry, and her strength declined. She was then advised to take another product that would make her “fresh” again and improve “blood flow.”

“At this point, I just wanted to get myself back. People kept asking what was wrong with me, and I couldn’t even explain it properly,” Nzeh said.

She added that her roommates eventually stopped taking the products, as she had only used them preventively and became concerned about her reactions.

Nzeh said by the time she returned home for the holidays, her symptoms had become more pronounced.

She eventually confided in her mother, telling her she believed she had PCOS.

Her mother, unfamiliar with the condition, offered support.

But her symptoms worsened with persistent vomiting and increasing weakness, which eventually led to hospitalisation.

“I told the doctor I had PCOS and was trying to manage it. The doctor was surprised. He kept asking, ‘Who diagnosed you?’ I insisted I knew I had PCOS,” she said.

After proper medical evaluation, she was told she did not have PCOS.

“I didn’t have PCOS. What I experienced was a normal developmental phase. The weight gain was normal, and the chin hair was genetic,” Nzeh said.

Her missed periods, doctors explained, were largely linked to stress and extreme dietary restriction.

“I was only eating fruits and custard at some point. I wasn’t giving my body enough nutrients,” she said.

Despite medical reassurance, she initially struggled to accept the diagnosis due to the volume of online narratives she had consumed.

“It felt like a psychological episode. I genuinely believed I had PCOS and that doctors were not treating me properly,” Nzeh added.

For 26-year-old Inioluwa Oladele, self-diagnosis began with a search for relief from severe menstrual pain.

She told Sunday PUNCH that in 2024, she turned to social media, particularly TikTok, after a friend mentioned that birth control pills had helped manage similar symptoms.

Instead of consulting a doctor, she sought answers online.

Oladele said, “I wanted to know if birth control pills could help with period pain. The videos were very reassuring. People shared positive experiences and recommended brands.”

Encouraged by the content, she purchased contraceptives from a pharmacy.

Initially, she experienced relief. Her period became lighter and shorter, and the severe cramps reduced significantly.

“For someone who used to being very sick during her period, it was a huge relief,” the young lady added.

However, the improvement did not last. Over time, she began to experience irregular cycles, worsening cramps, weight gain, acne, mood swings, anxiety, and sleep disturbances.

“The pros were maybe one or two, but the side effects became overwhelming,” she recounted.

Seeking answers, Oladele returned to social media, where she encountered discussions suggesting she might have PCOS.

“That comment really unsettled me,” she recalled. “I went from worrying about side effects to thinking something was fundamentally wrong with my body.”

Oladele said she began to interpret her symptoms: irregular periods, acne, weight gain, and mood changes, as signs of an underlying hormonal disorder rather than drug side effects.

“That was the turning point for me. I realised that the internet could easily make you panic. One minute you’re looking for help, the next minute you’re convinced you have a completely different condition,” she said.

Rather than continue relying on online speculation, Oladele decided to seek professional medical attention.

She underwent a thorough clinical evaluation, after which doctors informed her that the contraceptive brand she had been taking had significantly disrupted her hormonal balance.

“I had to get properly examined and placed on the right treatment for my period pain,” Oladele said.

Two years later, she says she is still dealing with the aftermath.

“I still have acne and dark spots from the breakouts, and I’m still trying to lose the weight I gained. I’m still trying to get myself back. Mentally, I lost it.

“The weight gain, the acne, the changes in my body, it worsened my depression and gave me anxiety. It affected my self-esteem. It affected me physically, mentally and emotionally. I was a wreck,” Oladele lamented.

Looking back, she says her biggest lesson was understanding that online information should never replace professional medical diagnosis and care.

“What worked for someone else wasn’t necessarily right for me. And sometimes, what you read online can make you more afraid than informed,” she said.