PCOS renamed to PMOS to better reflect condition

A chronic condition which affects 1 in 8 people with ovaries worldwide is to be renamed to better reflect symptoms and hopefully lead to a higher diagnosis rate. Following a fourteen-year patient-led campaign, polycystic ovary syndrome (PCOS) will be renamed polyendocrine metabolic ovarian syndrome (PMOS).

The name change was announced in a paper published in The Lancet and presented at the European Congress of Endocrinology in Prague. Experts said that by focusing only on cysts, the previous name meant many struggled to get a diagnosis and have their condition treated.

The paper says:

The term PCOS is inaccurate, implying pathological ovarian cysts, obscuring diverse endocrine and metabolic features, and contributing to delayed diagnosis, fragmented care, and stigma, while curtailing research and policy framing.

PCOS gets a new name

PMOS will be characterised by fluctuations in hormones, affecting metabolic and mental health, skin, and the reproductive system, irregular menstrual cycles, difficulty getting pregnant,  and links to type 2 diabetes and cardiovascular disease, not just ovaries and cysts.

What is often missed is that because it affects hormones, people with the condition often have a higher resistance to insulin. This can mean a higher chance of type 2 diabetes, and it can be harder to treat.

Despite the condition previously having the word ‘polycystic’ in it, experts were particularly keen to change the name as it’s been proven that people with PMOS don’t have any increase in abnormal cysts on the ovaries.

By including polyendocrine, the new name recognises that it’s a condition that affects the endocrine system, the network which creates and releases hormones around the body, not just the reproductive system.

The name change was the result of 14 years of global collaboration, led by endocrinologists working with 56 patient and professional organisations around the world. After a survey answered by 22,000 people and multiple international workshops, 86% of participants agreed the condition needed a new symptom-based name.

Professor Helena Teede, endocrinologist and director of Monash University’s Monash Centre for Health Research & Implementation, spearheaded the campaign after decades of researching the condition.

She said:

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. It was heartbreaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition.

While international guidelines have advanced awareness and care, a name change was the next critical step towards recognition and improvement in the long-term impacts of this condition.

Supporting ALL women

While participants and experts knew a name change was needed, it was important that the new name reflected all involved from all over the world and didn’t create further stigma.

As Teede explained at the conference:

While ‘reproductive’ may be a more accurate direct term to cover all of the abnormalities in the ovary, but also in the endometrium and in the reproductive health during pregnancy, it also carries very significant stigma,” Teede said.

There are parts of the world where labelling a woman as having a reproductive condition is directly related to her value and worth in society, where cultural implications were enormous. For that reason, we spent a great deal of time on this, both in the surveys and also in the workshops. The terms that were agreed on were polyendocrine, metabolic, and ovarian. The next step was to bring them together in a new name.

Professor Terhi Piltonen, International Androgen Excess and Polycystic Ovary Syndrome Society (AE-PCOS Society) President, said:

It was essential that the new name was scientifically correct but also considered across diverse cultural contexts to avoid certain reproductive terms that could heighten stigma and be harmful for women in some countries

Rachel Morman, of Verity, the UK PMOS charity, said:

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

There will be a three-year transition period for the new name, which will be supported by a global education and awareness campaign aimed at health professionals, governments and researchers around the world. The new name will be fully implemented in the 2028 International Guideline update.

Featured image via Tribune