Living with Polycystic Ovary Syndrome: A Hidden Health Crisis Affecting Millions

I suspected I had polycystic ovary syndrome (PCOS) long before it was confirmed. The signs were unmistakable: acne scars across my back, irregular periods, and body hair in places I didn’t see on many of my friends. My suspicion began when one of my closest friends, who had taught me about bleaching body hair and waxing legs, received her own PCOS diagnosis as a teenager.

As many as one in ten women worldwide have PCOS, a condition associated with hormonal imbalances that can manifest through weight gain, excessive body hair, hair loss, irregular periods, and fertility challenges. The condition also increases the risk of serious health issues including high blood pressure, elevated cholesterol, diabetes, and heart disease. While the exact cause remains unclear, PCOS is known to follow genetic lines and can be influenced by lifestyle factors.

My diagnosis finally came last year at age 30, launching me into a journey to understand what this means for my health and future. What immediately became apparent was the overwhelming amount of information—and misinformation—surrounding the condition. Social media platforms like Instagram are flooded with unqualified influencers offering dubious advice, making it challenging to identify credible information in the absence of adequate medical guidance following my initial diagnosis.

The misinformation landscape is treacherous. Self-proclaimed “PCOS nutritionists” frequently recommend eliminating gluten, dairy, and carbohydrates despite minimal evidence supporting such restrictive diets. Others push unregulated supplements with potentially harmful side effects or expensive health plans and apps promising miraculous results. Exercise myths abound as well, with some claiming high-intensity cardio will worsen symptoms by elevating cortisol levels—when in reality, all forms of exercise can benefit those with PCOS.

The diagnosis process itself reflects the broader problem of medical misogyny in women’s healthcare. During the pandemic, my GP dismissed my concerns after a blood test showed “normal” hormone levels. Later, during an unrelated ultrasound, I was casually informed that I likely had PCOS due to numerous ovarian follicles. When I mentioned my previous negative blood test, the sonographer explained that blood testing is unreliable for diagnosis, especially for women using hormonal birth control.

“They’re not actual true cysts,” explains Helena Teede, an Australian endocrinologist and PCOS expert at Monash University. “They’re follicles or eggs that are just developing along a pathway, but they stop developing normally because they don’t like the hormones that they’re floating around in.”

The condition’s name itself is problematic and misleading. Teede notes that “polycystic ovary syndrome” completely fails to capture that “this is a hormonal condition with long-term impacts that are psychological, dermatological, metabolic, and reproductive beyond just fertility issues.” Her organization has launched a consultation process to rename the condition, likely to be completed this year.

Another pervasive myth involves testosterone levels. While PCOS does raise questions about gender and hormones, the notion that women with the condition have significantly elevated testosterone is false. As Teede explains, testosterone isn’t exclusively a male hormone, and women with PCOS typically don’t have elevated levels—rather, their bodies don’t process it effectively.

The medical response to PCOS often proves inadequate and reductive. After my diagnosis, a nurse practitioner advised me to simply tolerate my symptoms unless I wanted to become pregnant—reflecting the outdated assumption that reproduction is every woman’s primary concern. When I pressed for treatment options, I was offered metformin, a medication for insulin resistance and diabetes, without explanation of its relevance to my specific case.

Rachel Morman, chair of the UK PCOS charity Verity, finds this experience all too common: “After 20 years of doing this work, I’m like: ‘Why is this still happening?'” She recalls being told after her diagnosis in the early 2000s that she would never have children. While approximately 70% of women with PCOS do experience fertility challenges, with proper intervention most can conceive—Morman herself now has three children.

Women with PCOS face increased pregnancy risks, including miscarriage, gestational diabetes, and pre-eclampsia, but these are largely preventable with proper screening and lifestyle management. The medical focus on fertility overlooks the condition’s wide-ranging effects on women’s overall health and quality of life.

Treatment options have actually diminished in some areas. Morman notes that hair removal treatments were once available through the NHS for women diagnosed with PCOS but have since been eliminated. This gap in care pushes many toward alternative information sources and practitioners.

To counter widespread misinformation, Teede helped develop comprehensive international evidence-based guidelines for PCOS in 2023, along with an app called AskPCOS to guide women toward appropriate treatment pathways. Unlike many social media influencers, these resources avoid making false promises about “curing” what is fundamentally a lifelong condition.

“There are a whole lot of individual practitioners, most of whom are not actually practitioners, who are there for financial gain,” Teede warns. “The biggest challenge I have is the misinformation, and then associated with that, the harm that’s done by denigrating actual evidence-based strategies.”

Despite these challenges, awareness of PCOS has grown significantly over the past eight years. In the UK, collaborative initiatives aim to establish proper treatment pathways and improve standards of care. The condition is increasingly recognized as a research priority by medical authorities.

For women with PCOS, the journey involves both managing symptoms and accepting certain realities of a chronic condition. With regular health monitoring, evidence-based treatments, and growing awareness, those affected can navigate this complex condition with greater confidence and support than ever before.