Time to rename PCOS? Global study finds misleading name fuels misdiagnosis

Polycystic ovary syndrome (PCOS) affects one in eight women globally. However, this complex hormonal condition is under-researched and often misunderstood.

This is partly due to its name, which overemphasises “cysts” and the ovaries. In fact, you can have PCOS without cysts.

It can affect many parts of the body, not just the ovaries, leading to acne, excess body hair, changes in metabolism, and even mental health issues.

Our new research, published this week, shows that changing the name would help better reflect the complexity of PCOS and improve awareness about this condition. We surveyed 7700 health professionals and people with PCOS and found the majority supported a name change.

What is PCOS?

PCOS is a chronic condition caused by an imbalance of multiple hormones – the body’s chemical messengers – that circulate through the body.

Genes and environment play a role. Lifestyle factors, such as diet (especially ultraprocessed foods) and inactivity, can also lead to weight gain and worsen its severity.

In PCOS, the “cysts” are actually partially developed eggs that, due to underlying hormonal imbalance, remain dormant. This means they’re less likely to be released (ovulation).

Unlike conventional ovarian cysts, these dormant eggs will generally not grow larger, cause pain, require surgery or burst. Instead, they’re slowly reabsorbed over time back into the ovary.

Having dormant eggs in your ovaries is not, by itself, enough to be diagnosed with PCOS – and you can have PCOS without any dormant eggs.

So, what’s needed to diagnose PCOS?

For adults, a diagnosis requires two of three features:

1. Irregular periods (due to limited ovulation).

2. High levels of certain hormones (androgens), such as testosterone, which is evident either in blood tests or symptoms (excess facial and body hair, acne, and thinning/balding scalp).

3. Excess dormant eggs detected either on an ultrasound or ovarian hormone blood test.

In adolescents, only the first two criteria are needed for a diagnosis. Ovary tests (ultrasound or blood tests) are not recommended until after age 20, as changes in the ovaries are common during normal adolescent development.

However, these criteria focus heavily on the ovaries and menstrual cycles, neglecting the condition’s broader impacts.

Widespread health effects

In fact, hormonal imbalances in PCOS affect multiple systems in the body. This can include:

Metabolism: Higher blood pressure and cholesterol, and greater risk of heart disease and diabetes.

Reproductive system: Irregular menstrual cycles, reduced fertility and pregnancy complications, and increased endometrial cancer risk.

Skin: Excess facial/body hair, acne, scalp hair thinning and dark skin patches.

Mental health: Anxiety, depression, disordered eating and body image concerns.

PCOS has also been linked to sleep apnoea (a sleep disorder involving irregular breathing, snoring and fatigue), and inflammatory conditions such as asthma.

Widespread confusion

It’s not uncommon for women with PCOS to see two or three doctors and wait years for a diagnosis. Many types of doctors, including GPs and hormone, skin and fertility specialists, may be involved in care.

Often, healthcare providers focus on reproductive concerns, overlooking other health impacts.

Common but problematic approaches include not informing women of the diagnosis, telling them not to “worry” about their PCOS until they wish to conceive, providing inadequate information or only addressing the problem in their speciality area, such as infertility.

This fragmentation creates a troubling paradox. Some are told they’ll face infertility. Yet, without proper education, they may be unaware they can still occasionally ovulate and may experience unexpected pregnancies.

Conversely, others planning for families often face unforeseen fertility difficulties that early comprehensive care – such as reproductive life planning, healthy lifestyle and early treatment – could have addressed.

The case to change the name

In our new study, we surveyed 3462 health professionals and 4246 people with PCOS across six continents.

We wanted to find out what healthcare professionals, doctors and those affected by the condition understood about PCOS, and whether understanding has improved over time.

We also wanted to understand whether changing the name – for example, to include “endocrine” or “metabolic” – could have a positive impact, given frequent confusion and misdiagnosis.

Support for a name change was widespread: 86% of women with PCOS and 76% of health professionals said renaming PCOS would better reflect the condition, reduce confusion and likely lead to better outcomes.

We’re now leading an international process to find a consensus on a new name and formally change it in the International Classification of Diseases. This involves engaging widely with health professionals and people with PCOS.

By reframing PCOS beyond a purely reproductive disorder, a name change can support broader research funding, education and advocacy. It may lead to better recognition and improved diagnosis, care and outcomes for people with PCOS.

Combating misinformation with evidence

Accurate information is critical for proper PCOS management. Yet misinformation about the condition – for example, that PCOS can be cured through diet or exacerbated by the oral contraceptive pill – is rife on social media.

We have also co-designed and developed evidence-based guidelines and free resources for people with PCOS to find out more about the condition, including the free Ask PCOS app.

Renaming PCOS is another key step in improving knowledge about this understudied condition – and care for the 170 million women affected worldwide.

This article originally appeared on The Conversation.