Women’s most common hormonal disorder gets a new name

The name change is based on an international process led by Australia’s Monash University, the results of which have been published in the prestigious medical journal The Lancet.

The syndrome’s current name, polycystic ovary syndrome, was widely considered misleading because it refers to ovarian cysts, which are not actually present in the condition.

The new name was also seen as providing a more accurate description of the syndrome, which affects not only hormonal function but also metabolism, mental health, the skin and reproductive health.

One of the leaders of the renaming process was Professor Terhi Piltonen from the University of Oulu and Oulu University Hospital. Piltonen also serves as the President of the International Androgen Excess and Polycystic Ovary Syndrome Society (AE-PCOS Society).

The largest renaming process ever undertaken

The name change is the result of a 15-year, multi-stage international effort. It involved 56 patient and professional organisations, more than 22,000 survey responses, and workshops held around the world. The patient organisation Verity from the UK and the Finnish patient organisation Korento ry were both actively involved. Eighty-four per cent of patients and healthcare professionals supported changing the name.

Professor Helena Teede of Monash University, who led the process, says that updating the name was essential.

“Diagnosis was delayed and care was inadequate because the syndrome was not taken seriously due to its name. The new name better reflects its complexity and lifelong impact,” says Teede.

The aim of the name change is not to define a new disease, but to update an outdated term in line with current scientific understanding.

Professor Terhi Piltonen, the leader of the PMOS research at the University of Oulu and Oulu University Hospital, emphasises the importance of broad cultural consultation.

“The name needed to be scientifically accurate while also working across different cultures without increasing stigma. For this reason, women and experts from around the world were consulted during the naming process.”

Global implementation strategy to support adoption of the new name

PMOS will be introduced over a three-year transition period. The change will be supported by an international education and awareness campaign targeting patients, healthcare professionals, authorities and researchers.

The new name will be incorporated into the 2028 international clinical guidelines.

Globally, it is estimated that as many as one in eight women live with PMOS.

PCOS is not a “cyst disease” – new study corrects misconception

Research led by Professor Terhi Piltonen is a key part of the syndrome’s renaming, as it challenges persistent misconceptions about PCOS. According to the findings, PCOS is not associated with an increased prevalence of ovarian cysts, despite the syndrome’s name having implied otherwise.

“In a large population-based study, women with PCOS were not found to have more ovarian cysts of any type than women without a PCOS diagnosis,” says doctoral researcher Ewelina Kuusiniemi, one of the study’s authors.

This is the first study in the world to systematically investigate the link between PCOS and ovarian cysts. The study has been published in the prestigious journal JAMA Internal Medicine.

Read more: PCOS is not a “cyst disease” – new study corrects a misconception