Why PCOS May Be Misnamed and Barriers to Accurate Diagnosis Persist

Polycystic Ovary Syndrome (PCOS) is one of the most common endocrine disorders affecting women of reproductive age, yet it remains profoundly misunderstood and misrepresented—starting with its very name. The term “Polycystic Ovary Syndrome” has long been criticized by medical professionals and researchers for being misleading, overly focused on one physical manifestation (ovarian cysts), and neglecting the broader metabolic and hormonal disturbances involved. A global rebranding initiative, spearheaded by Monash University and supported by international medical organizations, is now pushing to change how we label and understand this complex condition.

In this article from betterhealthfacts.com, we explore why experts believe PCOS is misnamed, how this affects diagnosis and care, and what a new name might mean for millions of women worldwide.

What Is PCOS?

Polycystic Ovary Syndrome is a hormonal disorder that affects approximately 8–13% of women of reproductive age globally. It is characterized by at least two of the following three features:

• Irregular or absent ovulation (anovulation)
• Elevated androgen levels (hyperandrogenism)
• Polycystic ovaries as seen on ultrasound

Despite the term "polycystic," not all women with PCOS have cysts on their ovaries, and many women with ovarian cysts do not have PCOS. This misalignment between the name and the clinical reality has led to widespread confusion and delayed diagnoses.

Why the Name Is Problematic

Medical experts across the globe have raised concerns about the term “Polycystic Ovary Syndrome.” The current name suggests that the disorder is primarily about the ovaries or the presence of cysts, which downplays or entirely ignores the systemic, hormonal, and metabolic components of the condition. In reality, PCOS involves dysfunction across multiple organ systems and is associated with an increased risk of several serious health issues.

“PCOS is fundamentally a hormonal disorder with metabolic, reproductive, and psychological manifestations. The current name is outdated and misleading, causing harm through confusion and misdiagnosis.” — Dr. Helena Teede, endocrinologist and lead researcher at Monash University

The Monash University Initiative to Rename PCOS

Monash University, located in Australia, has long been a leader in PCOS research. In collaboration with an international task force of clinicians, researchers, and patient advocates, the university has launched an initiative to reconsider the name of PCOS. The goal is to adopt a term that reflects the systemic nature of the condition and promotes earlier recognition and better management.

This renaming effort is supported by medical organizations such as the Endocrine Society, the Androgen Excess and PCOS Society, and various international women’s health bodies. The working group is currently collecting input from patients, clinicians, and public health agencies to propose a new name that meets three core criteria:

1. Medically accurate
2. Inclusive of all manifestations of the condition
3. Understandable by the general public

Common Misconceptions About PCOS

The name “Polycystic Ovary Syndrome” contributes to a series of misconceptions that undermine care and delay intervention:

• Misconception 1: PCOS always involves ovarian cysts — This is not true. The cysts referenced are actually immature follicles and not true cysts.
• Misconception 2: PCOS is only a fertility issue — PCOS affects metabolic health, mental well-being, and cardiovascular risk, even beyond reproductive years.
• Misconception 3: Irregular periods are normal for teenagers — While some irregularity can be expected during puberty, persistent symptoms may indicate PCOS.

The Systemic Nature of PCOS

PCOS is not just a reproductive condition. It affects nearly every aspect of a woman's health. Here are some of the systemic consequences often overlooked due to the disorder’s narrow name:

• Metabolic dysfunction: Up to 70% of women with PCOS experience insulin resistance, increasing their risk of type 2 diabetes and obesity.
• Cardiovascular risk: Women with PCOS have higher rates of hypertension, dyslipidemia, and cardiovascular disease.
• Mental health: Anxiety and depression are up to three times more prevalent in women with PCOS.
• Sleep disorders: PCOS is associated with sleep apnea, particularly in those who are overweight.

Barriers to Accurate Diagnosis

Despite its high prevalence, PCOS is frequently underdiagnosed or diagnosed only after long delays. Studies suggest the average time from symptom onset to diagnosis is over two years, with many women seeing multiple healthcare providers before receiving a proper assessment.

Several barriers contribute to this delay:

• Lack of awareness among primary care providers
• Confusion due to the misleading name
• Overreliance on ultrasound findings
• Dismissal of symptoms as “normal” hormonal changes, especially in teens

“The diagnostic process is flawed partly because the name steers attention away from the real drivers—insulin resistance, androgen excess, and genetic predisposition.” — Dr. Ricardo Azziz, PCOS researcher and reproductive endocrinologist

Consequences of Misdiagnosis and Delayed Diagnosis

When PCOS is not diagnosed early, women miss critical windows for intervention, including:

• Early management of insulin resistance to prevent diabetes
• Hormonal regulation to reduce long-term risks such as endometrial cancer
• Mental health support for anxiety, depression, and body image issues

Delayed diagnosis also impacts fertility planning and heightens emotional distress due to unexplained symptoms such as weight gain, acne, or hirsutism (excess hair growth).

What a Renaming Could Accomplish

Renaming PCOS could do more than just provide semantic clarity—it could radically improve how the condition is perceived, diagnosed, and managed. A more appropriate name would:

• Reflect the full systemic impact, not just reproductive aspects
• Encourage earlier screening for metabolic risk factors
• Improve patient education and self-advocacy
• Drive better interdisciplinary care across endocrinology, gynecology, and psychiatry

Monash University’s renaming effort includes suggestions like “Metabolic Reproductive Syndrome” or “Androgen Excess Syndrome,” but the final term is still under review. Importantly, this initiative emphasizes patient input to ensure the new terminology feels empowering, not stigmatizing.

Patient Voices in the Naming Debate

Women living with PCOS have voiced their frustrations for years. Many feel the current name obscures their lived experience. A more accurate term could validate their symptoms and accelerate appropriate care.

“When I was diagnosed, I was told I had ovarian cysts, but no one explained the hormonal issues or why I was gaining weight. I didn’t realize until years later that I had insulin resistance. The name confused me and my doctors.” — Patient testimony from global PCOS survey led by Monash University

Recommendations for Patients and Providers

Until a new name is officially adopted, patients and providers can still improve outcomes through increased awareness and holistic care strategies.

For Patients:

• Track your menstrual cycle and symptoms
• Ask your doctor about hormonal and metabolic screening
• Advocate for your mental health needs
• Join support groups or educational forums

For Providers:

• Use Rotterdam criteria judiciously but consider symptoms in context
• Screen for metabolic dysfunction and cardiovascular risks
• Collaborate with endocrinologists and mental health professionals
• Use plain language to educate patients about the full spectrum of PCOS

The Future of PCOS Diagnosis and Management

A name change alone won’t fix all the systemic issues surrounding PCOS, but it is a powerful first step. Combined with medical education reform, patient advocacy, and multidisciplinary research, the renaming initiative could mark a turning point in women’s health.

Better screening protocols, broader diagnostic criteria, and recognition of mental health and metabolic impacts are all critical components of a more compassionate, science-driven approach to PCOS.

Conclusion

Polycystic Ovary Syndrome is a complex, multifaceted condition that affects millions of women globally. The term “PCOS” fails to reflect the full spectrum of symptoms and risks, contributing to diagnostic delays, miscommunication, and under-treatment. Efforts led by Monash University to rename the condition represent a long-overdue step toward better care and greater health equity.

As awareness grows and the language we use becomes more accurate, we open doors to earlier intervention, more empathetic clinical care, and improved long-term outcomes for women affected by this disorder.

At betterhealthfacts.com, we support efforts that align medical terminology with scientific understanding and patient experience—because accurate naming isn’t just about semantics, it’s about saving lives.