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.

Buying into quackery

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.”

She purchased it as well.

“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.

Turning online for diagnosis

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.

NAFDAC issues warnings

According to the National Agency for Food and Drug Administration and Control, false and misleading health claims circulating online are increasingly influencing treatment decisions, often with dangerous consequences.

Speaking on the risks of online-driven self-medication, the Director-General of the agency, Prof Mojisola Adeyeye, warned that combining unknown herbal preparations with alcohol or prescription medicines can trigger severe health complications, including organ damage and treatment failure.

Checks by Sunday PUNCH show that NAFDAC has intensified surveillance of online marketplaces, where unregistered and unsafe medicines are increasingly sold directly to consumers.

The agency says this digital shift has made it easier for counterfeit, falsified, and unapproved products to reach unsuspecting buyers.

A misunderstood condition

According to the World Health Organisation, PCOS is one of the most common hormonal disorders affecting women of reproductive age globally.

It is a complex endocrine and metabolic condition characterised by irregular ovulation, elevated androgen levels, and, in some cases, multiple small ovarian follicles visible on ultrasound.

Common symptoms include irregular or absent menstrual cycles, acne, unexplained weight gain, excessive facial or body hair, scalp hair thinning, and fertility challenges.

However, WHO notes that PCOS extends beyond reproductive health, with increasing recognition as a lifelong metabolic disorder associated with insulin resistance, type 2 diabetes, cardiovascular disease, obesity, anxiety, depression, eating disorders, and poor body image.

The organisation estimates that PCOS affects between 6 and 13 per cent of women of reproductive age worldwide, though some estimates place the prevalence as high as one in 10 women globally. Importantly, up to 70 per cent of cases are believed to remain undiagnosed.

This diagnostic gap has significant implications, as it means millions of women may live with unexplained symptoms, while others may mistakenly self-diagnose based on symptom overlap alone.

For many, social media becomes the first point of contact with information about PCOS, often long before any clinical consultation.

A 2024 review published in the International Journal of Environmental Research and Public Health noted that prevalence estimates vary widely depending on diagnostic criteria, highlighting the complexity of diagnosis and the need for standardised clinical assessment.

Despite increasing awareness, delayed diagnosis remains common globally, with many women waiting years before receiving confirmation, often after repeated misdiagnoses or dismissal of symptoms.

Researchers writing in the 2025 journal Acta Psychologica noted that self-diagnosis frequently begins with symptom interpretation through online searches and social media communities.

Similarly, a 2025 Nigerian study published in Global Health Promotion found that urban young adults rely heavily on social media for health information and are particularly vulnerable to misinformation.

The study identified key drivers of health misinformation, including influencers, bloggers, politicians, and other digital content creators, with consequences such as confusion, mistrust, and poor health decision-making.

‘Patients arrive with preconceptions’

The former Secretary of the Association of Community Pharmacists of Nigeria, Lagos State chapter, Okotie Jonah, told Sunday PUNCH that social media has become a powerful, though often unreliable, driver of health decisions among young Nigerians.

He said, “In practice, the influence is very significant. Many young people now come into pharmacies or clinics with preconceived ideas based on what they have seen online. Sometimes, even when you try to correct misinformation, they argue with you because they trust what an influencer has said more than what a healthcare professional is telling them.”

Jonah noted that this growing reliance on digital health advice has made clinical intervention more challenging.

“They come already convinced,” he explained. “And when someone is already certain about a diagnosis they made online, it becomes much harder to guide them appropriately.”

Jonah stressed that while self-medication has a limited and recognised place in healthcare, such as the use of over-the-counter medicines for mild, short-term symptoms, complex hormonal disorders like PCOS require professional evaluation.

“There is nothing inherently wrong with responsible self-care for minor ailments. If you have a simple headache or mild fever, taking an appropriate over-the-counter medicine may be reasonable. But when symptoms persist or become more complex, professional evaluation becomes essential.

“Even a doctor will not simply look at a patient and declare that she has PCOS. Diagnosis requires a proper medical history, physical examination, laboratory investigations, and often imaging, such as an ultrasound scan. Other conditions must also be ruled out,” he added.

Convincing self-diagnosis

A non-clinical psychotherapist and certified Cognitive Behavioural Therapist, Michael Jacob, told Sunday PUNCH that the growing wave of self-diagnosis among young Nigerians is not just a social media trend, but a psychological response to emotional uncertainty, information overload, and gaps in healthcare access.

From his clinical observation, he said many young people now arrive at conclusions about their mental or physical health long before any professional assessment.

“In my experience, self-diagnosis among young Nigerians is very common now. Many people identify with conditions like PCOS, depression, or anxiety disorder before ever seeing a professional,” Jacob said.

According to him, the drivers are layered and extend beyond internet influence.

He said, “What is driving it goes beyond curiosity. Yes, the internet plays a role, but deeper than that is limited access to proper healthcare and a feeling of not being heard. Psychologically, self-diagnosis gives people a sense of clarity and control. It helps them name their distress when no one else has.”

Jacob noted that repeated exposure to symptom-based content on platforms such as TikTok can gradually reshape perception.

“Repeated exposure conditions the mind to become hyper-vigilant. Young people begin to scan their bodies for signs that match what they have seen online. Ordinary sensations like fatigue or mood changes start to feel abnormal,” he said.

Over time, he added, this changes how individuals relate to their bodies.

“The body is no longer just experienced. It becomes something constantly analysed and sometimes misinterpreted,” he said.

Jacob explained that this process is reinforced by the ease with which users identify with health labels online.

“People tend to strongly identify with conditions because these labels provide emotional validation. When someone sees experiences that resemble depression or anxiety disorders, it creates a powerful sense of recognition. It reduces uncertainty and answers an internal question about their distress,” he said.

However, he warned that social media can also create a false sense of certainty.

“The repetition of simplified symptom lists gives the impression of accuracy. The brain begins to treat familiarity as truth. But many conditions overlap, and without clinical evaluation, that certainty can be misleading and harmful.

“Health anxiety is when a person becomes excessively preoccupied with the fear of having a serious illness. Self-diagnosis feeds it. The more someone searches and labels their symptoms, the more anxious they become, and the anxiety itself begins to produce physical sensations that feel real,” Jacob added.

From online suspicion to clinical confirmation

While some individuals struggle with self-diagnosis, the alarm bells rang for Adanna Kanu through her menstrual cycle.

Speaking with Sunday PUNCH, she said her period had never been regular. At times, they appeared once in several months; other times, they disappeared entirely for almost a year.

“I always felt something wasn’t right with my hormones because my menstrual cycle was very irregular. I would see my period just once or twice a year, and I knew that wasn’t normal compared to other ladies. So, I tried to live with it. I assumed it would eventually resolve itself,” Kanu said.

But in 2020, her body began to change more noticeably: rapid weight gain, severe acne, and painful, prolonged menstrual bleeding that remained irregular.

That was when she turned to the internet, and social media became a diagnostic reference point.

Kanu said her first encounter with PCOS came not from a doctor, but from a video by American actress Keke Palmer, who shared her symptoms and experience.

“It felt like she was describing exactly what I was going through. That video pushed me to start researching and eventually seek proper medical help.

“Social media can make you start connecting dots very quickly. Some of the information was accurate, like acne, irregular periods, and weight changes, but it also made things feel more certain than they actually were.

“In reality, diagnosis required proper medical tests and professional evaluation, not just symptom matching online,” Kanu added.

Eventually, she returned to the hospital, underwent investigations, and was formally diagnosed with PCOS.

Kanu said one of the most troubling patterns she observed is how PCOS is portrayed in digital spaces.

“One big misconception is that PCOS looks the same for everyone. Another is that having one or two symptoms automatically means you have it. I also see people reducing it to just weight gain, when it is actually a much more complex hormonal condition.

“There is more awareness now, but it also makes it easy for people to assume they have a condition after watching relatable videos. Many young women are genuinely trying to understand their bodies. But without proper guidance, that curiosity can easily turn into self-diagnosis,” she said.

“Yes, I’ve seen situations where people strongly believed they had PCOS based on online content. But after proper medical evaluation, it turned out to be something else, like stress-related hormonal imbalance or other conditions. The consequence is often anxiety and unnecessary worry before getting a clear diagnosis,” Kanu said.

She noted that the biggest risk is misinformation leading to wrong assumptions and, in many cases, inappropriate treatment.

“PCOS is not something you conclude from symptoms alone. Online information should guide you, not define your condition. Living with PCOS has made me more intentional about how I take care of myself. Before, I used to overlook changes in my body, but now I pay attention to them.

“Listen to your body, but always seek proper medical guidance. Health information online should be a starting point, not a conclusion,” Kanu advised.

Expert clarifies complexity

According to a Consultant Obstetrician and Gynaecologist at Nnamdi Azikiwe University Teaching Hospital, Prof George Eleje, PCOS is far more complex than many online discussions suggest.

“It is a syndrome of menstrual cycle disturbance, hyperandrogenism, and polycystic ovaries, often accompanied by obesity, hirsutism, and infertility. It is frequently misunderstood because it can mimic other gynaecological conditions and even overlap with disorders such as endometriosis and adenomyosis,” he explained.

Eleje noted that this complexity is precisely why self-diagnosis can be misleading.

“Symptoms like irregular periods, weight gain, acne, or excessive hair growth can occur in many other conditions. A proper diagnosis requires clinical evaluation, laboratory investigations, and an ultrasound scan. In PCOS, androgen levels, particularly testosterone and androstenedione, are often elevated,” the consultant added.

Eleje noted that easy internet access, combined with the lower cost of online information, has made digital platforms the first point of call for many young women seeking answers about their health.

“Without proper evaluation, a person may over-treat or under-treat herself. Improper treatment can worsen the condition and may even affect fertility. There should be sustained enlightenment campaigns to educate the public about PCOS, its symptoms, and the importance of seeking proper medical evaluation,” he said.