PCOS name change 'more representative of condition'

Changing the name of a metabolic condition affecting more than 170 million women globally is "more representative" of it as a whole-body condition - as opposed to just ovaries - health experts in Jersey say.

Polycystic ovary syndrome (PCOS) has been renamed to polyendocrine metabolic ovarian syndrome (PMOS).

The International PCOS Network said it hoped the name change, instituted on 12 May, would improve understanding and help with treatment and diagnoses.

Jessica Pinel, a nutritionist and the chair of PCOS Jersey, said she felt the term PCOS "limited the condition to having an effect on women's ovaries, whereas we know that it is a full body condition".

Those with PCOS/PMOS had higher levels of male hormones and could suffer from irregular periods and weight gain, the NHS said.

She said she felt the term PCOS "limited the condition to having an effect on women's ovaries, whereas we know that it is a full-body condition".

Pinel said in her work she supported a lot of women with PCOS/PMOS and that there was "such a diverse array of symptoms" which had "such an impact on their day-to-day lives".

She said: "We know that it can be fatigue, hair growth in unwanted places, acne, brain fog even, irregular periods and infertility.

"It is that full-body condition with a range of different symptoms and, hopefully, [the name change] allows more women to get support and treatment for that range of different symptoms because the condition affects us in unique ways."

Pinel said she wanted more education for women who may not know they had it and to support those who did.

"We can't just put the onus on the women themselves to seek out that sort of education - there is so much misinformation online, on TikTok, Instagram, even Facebook.

"If that's where you're seeking out knowledge... we've got to be really, really careful," she said.

Pinel advised people who thought they had the condition to seek professional support.

She said: "In terms of diagnosis, you are always entitled to a second opinion.

"I wasn't diagnosed the first few times. I had those exploratory tests, so I sought out a secondary opinion because I know my body.

"If you feel like you're not being seen or heard, then please go and seek that second opinion because you deserve it."

The government said a women's health strategy was a requirement of the Government Plan and was due to be published later this year.

Jersey GP Dr Jessica Langtree-Marsh said PCOS/PMOS was "hugely under-researched and hugely misunderstood".

Dr Langtree-Marsh said early diagnosis and education "is essential" and ensuring the "right diagnosis for individuals".

She said: "I think PCOS is widely overlooked, and we see it as just simply: 'Come back when you want to have a baby and we'll fix it then.'

"Actually, we need to look at this as a lifespan condition."

She said she hoped the name change would "lead to more broader ways of treating the condition, so not solely focusing on contraceptive pills to help with it, but looking at more metabolic medications that we can use to help combat the condition".

Dr Langtree-Marsh said PCOS was discovered 70 years ago by two male surgeons operating on women with no periods and found ovaries that "looked a certain way".

The surgeons, Dr Irving Stein and Dr Michael Leventhal, originally named the condition Stein-Leventhal Syndrome before it was changed to PCOS.

She said: "The name of PCOS acknowledged that the condition only really affected the ovaries, yet we know it's an all-body condition.

"So the rebranded PMOS is trying to appreciate that it affects women more generally rather than just the ovaries, so that it's a whole body condition."

Langtree-Marsh said although the name "doesn't exactly roll off the tongue", she was happy the definition "moves away from focusing solely on the ovaries".

She said: "What it doesn't do, and what we still don't know, is address the core why PCOS actually happens, or PMOS actually happens.

"It's kind of just a cloak or phrase for the symptoms."