Abstract illustration symbolizing the complexity of PCOS diagnosis.

PCOS Overdiagnosis? Why More Women Are Being Mislabelled

"Are expanding disease definitions unnecessarily labelling women with polycystic ovary syndrome? Experts raise concerns about overdiagnosis and the potential harms of labeling women, particularly younger women and those with milder symptoms."


Polycystic Ovary Syndrome (PCOS) stands as the most frequently diagnosed endocrine disorder among women of reproductive age, impacting fertility, reproductive health, metabolic function, cardiovascular health, and psychosocial well-being. Characterized by symptoms such as anovulation, irregular menstruation, ovaries appearing polycystic, and signs of androgen excess, PCOS manifests diversely, influenced by weight, ethnicity, and environmental factors. The severity of these symptoms varies significantly among individuals.

Over the years, the diagnostic criteria for PCOS have broadened, leading to an increase in the number of women diagnosed. This expansion has sparked concerns about potential overdiagnosis and unnecessary disease labeling, prompting a critical examination of the evidence and uncertainties surrounding PCOS diagnosis.

Originally identified in 1935 through a case series of seven women experiencing amenorrhea and infertility linked to multiple ovarian cysts, the diagnostic landscape of PCOS has evolved. Today, three distinct diagnostic criteria are in use, each contributing to the ongoing debate about who should be diagnosed with PCOS and what the implications are for their health.

The Shifting Sands of Diagnosis

Abstract illustration symbolizing the complexity of PCOS diagnosis.

The National Institutes of Health (NIH) established the first widely used diagnostic criteria in 1990. These criteria focused on the presence of both oligo-ovulation (irregular or infrequent ovulation) or anovulation (absence of ovulation) and clinical or biochemical signs of hyperandrogenism (excess androgens, male hormones).

A significant shift occurred in 2003 during a meeting of experts in Rotterdam. The Rotterdam criteria expanded the diagnostic net by including the sonographic presence of polycystic ovaries as one of the diagnostic features. Under these revised criteria, a woman needed only two out of the three characteristics—oligo- or anovulation, hyperandrogenism, or polycystic ovaries—to be diagnosed with PCOS. This broadened the scope of diagnosis considerably.

  • NIH Criteria (1990): Requires both oligo/anovulation and hyperandrogenism.
  • Rotterdam Criteria (2003): Requires two out of three: oligo/anovulation, hyperandrogenism, or polycystic ovaries.
  • AE-PCOS Society Criteria (2006): Requires hyperandrogenism and either oligo/anovulation or polycystic ovaries.
The Androgen Excess and PCOS Society in 2006 stipulated that clinical or biochemical evidence of hyperandrogenism was essential for a PCOS diagnosis. This perspective highlighted the importance of androgen excess in the syndrome's pathology, suggesting that non-hyperandrogenic phenotypes might not carry the same long-term health risks as hyperandrogenic ones. Despite these evolving perspectives, in 2012, an NIH workshop reviewed available evidence and recommended maintaining the broader Rotterdam criteria, while also suggesting the labeling of PCOS phenotypes to better characterize the syndrome's heterogeneity.

Navigating the Uncertainties

Given the evolving understanding of PCOS and the potential for overdiagnosis, a more cautious and individualized approach to diagnosis is warranted. Rather than applying a one-size-fits-all label, healthcare providers should carefully weigh the benefits and harms for each woman, considering her individual symptoms, risk factors, and preferences. A slower, stepped, or delayed approach to diagnosis may be more appropriate, allowing for ongoing monitoring and evaluation before committing to a lifelong label.

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This article is based on research published under:

DOI-LINK: 10.1136/bmj.j3694, Alternate LINK

Title: Are Expanding Disease Definitions Unnecessarily Labelling Women With Polycystic Ovary Syndrome?

Subject: General Engineering

Journal: BMJ

Publisher: BMJ

Authors: Tessa Copp, Jesse Jansen, Jenny Doust, Ben Wj Mol, Anuja Dokras, Kirsten Mccaffery

Published: 2017-08-16

Everything You Need To Know

1

What are the different diagnostic criteria used for Polycystic Ovary Syndrome (PCOS), and how have they evolved?

Polycystic Ovary Syndrome (PCOS) is diagnosed based on specific criteria, which have evolved over time. The original NIH criteria (1990) required both oligo/anovulation and hyperandrogenism. The Rotterdam criteria (2003) broadened this to include two out of three characteristics: oligo/anovulation, hyperandrogenism, or polycystic ovaries. The AE-PCOS Society criteria (2006) emphasized hyperandrogenism as essential, along with either oligo/anovulation or polycystic ovaries. This evolution reflects ongoing debates about the syndrome's defining features.

2

How did the Rotterdam criteria change the landscape of PCOS diagnosis, and why is this significant?

The Rotterdam criteria, established in 2003, significantly broadened the scope of PCOS diagnosis. These criteria state that a woman needs only two out of the three characteristics—oligo- or anovulation, hyperandrogenism, or polycystic ovaries—to be diagnosed with PCOS. This expansion has led to concerns about potential overdiagnosis, as the inclusion of polycystic ovaries alone, without other symptoms, can result in more women being labeled with the syndrome.

3

In what specific way do the AE-PCOS Society criteria differ from the Rotterdam criteria in diagnosing Polycystic Ovary Syndrome (PCOS)?

The AE-PCOS Society criteria, established in 2006, differ by requiring clinical or biochemical evidence of hyperandrogenism as essential for a PCOS diagnosis. Unlike the Rotterdam criteria, which allow a diagnosis based on two out of three criteria (including polycystic ovaries alone), the AE-PCOS Society emphasizes the importance of androgen excess in the syndrome's pathology. This perspective suggests that non-hyperandrogenic phenotypes might not carry the same long-term health risks as hyperandrogenic ones, leading to a more targeted diagnosis approach.

4

What are the potential harms and risks associated with the overdiagnosis of Polycystic Ovary Syndrome (PCOS) for women's health?

Overdiagnosis of Polycystic Ovary Syndrome (PCOS) carries several risks. It can lead to unnecessary medical interventions, increased anxiety and psychological distress related to the diagnosis. Additionally, labeling women, especially younger women and those with milder symptoms, may result in unwarranted long-term health concerns and impact their reproductive and metabolic well-being unnecessarily. It also strains healthcare resources and potentially diverts attention from women who genuinely need treatment.

5

Given the uncertainties in PCOS diagnosis, what approach should healthcare providers adopt to ensure accurate diagnosis and minimize potential harms?

Navigating the uncertainties of PCOS diagnosis involves a more cautious and individualized approach. Healthcare providers should carefully weigh the benefits and potential harms for each woman, considering her individual symptoms, risk factors, and preferences. This approach might involve a slower, stepped, or delayed diagnosis, allowing for ongoing monitoring and evaluation before assigning a lifelong label. A comprehensive assessment ensures that the diagnosis aligns with the woman's overall health profile and reduces the risk of overdiagnosis and its associated harms. Further research is needed to refine diagnostic criteria and understand the long-term implications of different PCOS phenotypes.

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