After more than a decade of campaigns, doctors around the globe have agreed to rename polycystic ovarian syndrome (PCOS). The condition, which impacts one in eight women — or 3.1 million women and girls in the UK — is characterised by fluctuations in hormones, with impacts on weight, mental health, skin, and the reproductive system.
New Name Aims to End Misconceptions
It is hoped the new name — polyendocrine metabolic ovarian syndrome (PMOS) — will end misconceptions that the condition is all about 'cysts', which has contributed to 'missed diagnoses and inadequate treatment', according to campaigners. Last year, a report by an all-party parliamentary group found more than a third of women with the condition had to wait longer than four years for a PCOS diagnosis. Since then, Wes Streeting has announced developments of the government's Women's Health Strategy, pledging to overhaul women's healthcare across the NHS.
Fourteen Years of Consultation
The renaming was spearheaded by UK patient charity Verity alongside endocrinologist Professor Helena Teede, director of Melbourne's Monash Centre for Health Research and Implementation. It took 14 years of consultation between global medics and patients. The new name was published in a consensus statement in the Lancet journal today, May 12, and simultaneously 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,' Prof. Teede commented. 'It was heart-breaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition.'
Evolution of Understanding
When doctors first named PCOS in 1935, they initially thought it was a disease primarily caused by physical changes to the ovaries. Decades of research have changed our understanding, with medics 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,' Prof. Teede added. 'A name change was the next critical step towards recognition and improvement in the long term impacts of this condition.'
Patient Reactions
Some with the condition are, understandably, hesitant in their celebrations, after years of feeling unsupported. Simone Margett, 30, from Norfolk, was diagnosed aged 18. 'I feel like we're now headed in the right direction, my only hope is that doctors are more sympathetic towards women who have PCOS,' she tells Metro. 'They have said things like “it's just part of being a woman” or “just lose weight and you'll be fine”. The name will take some getting used to and I hope it leads to better understanding of what it's like living with a condition like PCOS.'
Bristol-based writer Hannah Van De Peer is also 'hopeful' the change will help the next generation of women. 'It took me 10 years to get a PCOS/PMOS diagnosis simply because I didn't have ovarian cysts – and I spent a really long time wondering what was wrong with me,' the 27-year-old tells Metro. 'The next thing I'd like to see is more research into PMOS treatment. I was lucky enough to be offered metformin (a diabetes medication prescribed off-label for PMOS), but I know far too many people who have only been offered the contraceptive pill and dismissed when they've turned it down.'
What is PCOS/PMOS?
The exact cause of the condition is still unknown, though it is thought to be related to abnormal hormonal levels and is associated with resistance to insulin and raised levels of testosterone and the luteinising hormone (LH). Common symptoms listed by the NHS include: irregular periods or no periods at all; difficulty getting pregnant (due to irregular ovulation or no ovulation); excessive hair growth (hirsutism) – usually on the face, chest, back or buttocks; weight gain; thinning hair and hair loss from the head; oily skin or acne. You should talk to your GP if you have any of these symptoms.
Challenges Ahead
Even campaigners acknowledge this is not a quick fix solution, noting that it may add 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 (PCOS UK). '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.'
