PCOS renamed after decade-long campaign to end ‘cyst’ misconception

After more than a decade of campaigning, doctors around the world have agreed to rename polycystic ovary syndrome (PCOS).

It is hoped the new name, polyendocrine metabolic ovarian syndrome, or PMOS, will help end the misconception that the condition is all about cysts, which campaigners say has contributed to missed diagnoses and inadequate treatment.

The condition affects one in eight women, or 3.1m women and girls in the UK, and is linked to hormone fluctuations that can affect weight, mental health, skin and the reproductive system.

The renaming was spearheaded by UK patient charity Verity alongside Professor Helena Teede, director of Melbourne’s Monash Centre for Health Research and Implementation.

It followed 14 years of consultation with clinicians and patients around the world.

The new name was published in a consensus statement on May 12 and announced at the European Congress of Endocrinology in Prague.

The paper states that PCOS should now be referred to as PMOS.

“This is a landmark moment that will lead to desperately-needed worldwide advancements in clinical practice and research,” said Professor Teede.

“It was heart-breaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition.”

When doctors first named PCOS in 1935, they thought it was mainly caused by physical changes to the ovaries.

Decades of research have since changed that understanding, with clinicians now agreeing the condition is far more complex.

“What we now know is that there is actually no increase in abnormal cysts on the ovary and the diverse features of the condition were often unappreciated,” Professor Teede added.

“A name change was the next critical step towards recognition and improvement in the long term impacts of this condition.”

The exact cause of the condition is still unknown, though it is thought to be linked to abnormal hormone levels and is associated with insulin resistance and raised levels of testosterone and luteinising hormone.

Insulin resistance means the body does not respond properly to insulin, the hormone that helps control blood sugar. Luteinising hormone helps regulate ovulation.

Common symptoms listed by the NHS include irregular periods or no periods at all, difficulty getting pregnant, excessive hair growth, weight gain, thinning hair, oily skin and acne.

Campaigners have acknowledged that the name change could cause temporary confusion.

“Despite decades of tireless advocacy to improve awareness, we recognised that the risk of change would be worth the reward,” said Rachel Morman, chairwoman of Verity.

“This shift will reframe the conversation and demand that it is taken as seriously as the long-term, complex health condition it is.”

It is also unclear if, or when, the NHS will change the language it uses.

An NHS England spokesperson said: “We routinely review and update content on the NHS website to ensure it reflects the latest clinical advice and will carefully consider these recommendations.

“The NHS will also continue our work to improve women’s healthcare, including for this important group, which involves giving women more choice over their care, bringing down waiting times, and delivering more care in communities.”