Islanders living with a condition affecting one in eight women worldwide have welcomed a major international decision to rename it after years of criticism that the term was misleading.
PCOS Jersey said that renaming polycystic ovary syndrome (PCOS) could improve understanding of the disorder and lead to earlier diagnosis, but campaigners noted that more awareness is still needed in Jersey.
The condition will now be known as polyendocrine metabolic ovarian syndrome (PMOS) following a 14-year international review involving medical experts and patient groups.
The condition affects hormones and metabolism and can lead to symptoms including irregular periods, acne, fertility problems, weight gain, fatigue and excessive hair growth.
“The new name better reflects the condition”
PCOS Jersey said the new name better reflected the reality of living with the condition.
Committee chair Jessica Pinel and medical adviser Dr Jessica Langtree-Marsh explained: “The new name better reflects the condition as it allows people to recognise that the condition does not just affect a woman’s ovaries.
“PCOS/PMOS is a full-body condition that can significantly impact a woman’s metabolic, hormonal and mental health.”
The group said the current name had long caused confusion because not everyone diagnosed with the condition actually has ovarian cysts, while the wider health impacts are often overlooked.
PCOS Jersey hoped a more accurate name could encourage earlier recognition of symptoms and “a more holistic approach to treatment and support”.
What are the main symptoms of PCOS/PMOS?
NHS England defined three main symptoms of the condition due to be renamed as:
- “irregular periods – which means your ovaries do not regularly release eggs (ovulation);
- “excess androgen – high levels of “male” hormones in your body, which may cause physical signs such as excess facial or body hair;
- “polycystic ovaries – your ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs (but despite the name, you do not actually have cysts if you have PCOS).”
“Increased awareness could also help reduce stigma and validate the experiences of those living with the condition,” added Ms Pinel and Dr Langtree-Marsh.
PCOS Jersey said that many affected islanders were “relieved to see more open conversations happening around the condition”.
“Increasing awareness could lead to earlier diagnosis”
“A number of women have expressed frustration that the name ‘polycystic ovary syndrome’ does not fully capture the daily challenges they experience, particularly around symptoms such as fatigue, weight struggles, mental health, acne and hair loss,” the committee chair and medical advisor explained.
“Overall, there has been positive feedback from those who feel the conversation is finally moving towards better understanding and recognition of the condition as a whole-body disorder.”
However, the organisation noted that many islanders had shared experiences of symptoms being dismissed or normalised for years before eventually receiving a diagnosis.
PCOS Jersey said that “more could be done to increase awareness around the condition”.
“We understand that increasing awareness could lead to earlier diagnosis, improved support and better health outcomes for those living with the condition,” the group said.
“PCOS Jersey has already heard from many women who felt their symptoms were dismissed or normalised for years before receiving answers.”
This is something that committee chair Ms Pinel experienced herself.
“I personally struggled to receive a diagnosis with PCOS/PMOS even though I was experiencing symptoms that were impacting my day-to-day life and mental health for a number of years,” she explained.
“These included painful cystic acne, hair loss, hair growth in unwanted places, painful periods and missing periods.”
She added that her symptoms only improved after seeking a second opinion and receiving proper support for the condition.
PCOS Jersey noted that the new term “polyendocrine metabolic ovarian syndrome” was still “very medical jargon-heavy” and suggested a more patient-friendly name would have been preferable.
“They are the ones at the heart of the condition,” added Ms Pinel and Dr Langtree-Marsh.
