Helena Teede’s 14-Year Fight to Rename a Medical Condition

A quiet but seismic shift in women’s health has just taken place, one that could redefine how millions understand their bodies and seek care. After years of advocacy, the term polycystic ovary syndrome (PCOS) is being phased out in favor of polycystic ovary phenotype (SMOP)—a name change that reflects not just linguistic precision but a broader push to destigmatize and better diagnose a condition affecting up to 1 in 10 women worldwide. The transition, led by global health experts, marks a turning point in reproductive medicine, with implications for research, treatment, and patient dignity.

At the heart of this change is Professor Helena Teede, an endocrinologist whose 14-year campaign to reclassify PCOS has finally gained traction. Teede, director of the Monash University Centre for Women’s Health in Metabolism, Diabetes, and Fertility in Australia, has long argued that the term “syndrome” carries outdated and misleading connotations. PCOS, she contends, is not a single disease but a cluster of symptoms—hormonal imbalances, metabolic dysfunction, and reproductive challenges—that vary widely among individuals. The new terminology, SMOP (Stein-Leventhal Syndrome/Metabolic Ovarian Phenotype), better captures this complexity and aligns with modern diagnostic criteria.

The shift is not merely semantic. Experts warn that the old term PCOS has contributed to misdiagnoses, delayed treatments, and even stigma, with some patients dismissed as “just hormonal” or “imagining” their symptoms. “Language shapes how we perceive health conditions,” Teede told The Guardian in 2022. “PCOS has been framed as a women’s issue, but it’s a metabolic disorder with lifelong consequences—including higher risks of diabetes, heart disease, and mental health struggles.” The World Health Organization (WHO) and major medical bodies, including the Endocrine Society, have begun adopting SMOP in guidelines, though full global standardization may take years.

Why the Name Change Matters: Breaking Down the Science

PCOS has long been one of the most underdiagnosed and misunderstood conditions in women’s health. The original term, coined in 1935, described ovarian cysts visible via laparoscopy—a procedure no longer standard in diagnostics. Today, PCOS is diagnosed through blood tests (hormone levels, insulin resistance) and ultrasound, yet the name persists despite its limitations. “SMOP” acknowledges that not all women with PCOS have cysts, and it removes the implication of a single, uniform condition.

Key differences between the old and new frameworks:

• PCOS (legacy term): Focused on cysts and reproductive symptoms, often overlooking metabolic risks (e.g., obesity, type 2 diabetes).
• SMOP: Emphasizes metabolic dysfunction as a core feature, requiring screening for insulin resistance, cardiovascular health, and mental health comorbidities.
• Diagnostic flexibility: SMOP allows for variations in symptom presentation, reducing the risk of misdiagnosis in women of color, transgender individuals, and those with atypical symptoms.

Dr. Richard Legro, a reproductive endocrinologist at Penn State College of Medicine, notes that the shift also addresses historical biases. “For decades, PCOS research has been dominated by studies on white, cisgender women,” he said in a 2023 JAMA Network article. “SMOP forces us to ask: Are we missing entire populations because of outdated language?”

Global Adoption: Who’s Leading the Change?

The push for SMOP has gained momentum in recent years, with 56+ medical and advocacy organizations now endorsing the terminology, according to Teede’s Monash Centre for Women’s Health. Key supporters include:

• The World Health Organization, which updated its International Classification of Diseases (ICD-11) in 2022 to reflect metabolic-focused diagnostics.
• The Andrology Society, which advocates for inclusive language in reproductive health.
• National bodies like the UK’s NHS and CDC in the U.S., though full integration into clinical practice lags.

Criticism remains, however. Some clinicians argue that “SMOP” is too technical for patient education, while others question whether the name change will improve outcomes without systemic funding for research. “We’ve seen this before—new terms don’t fix gaps in care,” said Dr. Shivani Mishra, a fertility specialist in India. “The real test is whether hospitals and insurers update their protocols.”

What So for Patients: Symptoms, Diagnosis, and Treatment

For the 100+ million women globally estimated to have SMOP (formerly PCOS), the name change could lead to:

• Faster diagnoses: Primary care providers may now recognize metabolic red flags (e.g., irregular periods, excessive hair growth, acne) as part of a broader syndrome, not isolated issues.
• Tailored treatments: SMOP guidelines prioritize lifestyle interventions (diet, exercise) alongside medications for insulin resistance or hormonal imbalances.
• Mental health support: Depression and anxiety are twice as common in SMOP patients, yet often overlooked. The new framework encourages integrated care.

Where to seek help:

• Screening tools: The PCOS Awareness Association offers free symptom checkers aligned with SMOP criteria.
• Specialist directories: Find endocrinologists or reproductive health clinics via the Endocrine Society or ASRM (for fertility-focused care).
• Research updates: Follow NIH’s PCOS/SMOP studies for emerging treatments.

Next Steps: The Road Ahead for SMOP

The transition to SMOP is still in its early stages, with key milestones ahead:

1. 2024–2025: WHO and the International Federation of Gynecology and Obstetrics (FIGO) aim to finalize global SMOP diagnostic criteria, expected by mid-2025.
2. 2025–2026: Major insurers (e.g., Kaiser Permanente, NHS) may update coverage policies to reflect SMOP’s metabolic focus.
3. Ongoing: Advocacy groups are pushing for mandated SMOP education in medical schools, with pilot programs launching in Australia and the U.S.

The shift from PCOS to SMOP is more than a name change—it’s a call to rethink how society views women’s health. As Teede puts it: “We’re not just renaming a condition; we’re reframing how we treat women as whole people, not just patients with a label.”

Key Takeaways

• Why SMOP? Replaces “syndrome” with “phenotype” to reflect varied symptoms and metabolic risks.
• Who’s affected? Up to 1 in 10 women globally, with higher rates in marginalized communities.
• Diagnostic shift: Focus moves from cysts to metabolic and hormonal markers.
• Treatment focus: Integrated care for metabolic, reproductive, and mental health.
• Next steps: Global guidelines by 2025; insurer updates expected soon after.

This is a story still unfolding. If you or someone you know has been diagnosed with PCOS, now may be the time to ask your healthcare provider about SMOP and whether your treatment plan aligns with the latest research. Share your experiences in the comments—how has your care changed, or how has PCOS/SMOP impacted your life?

For updates: Follow Monash Centre for Women’s Health and PCOS Awareness Association for official announcements.