When Maureen Busby was diagnosed with Polycystic Ovary Syndrome (PCOS) at the age of 29, information about the condition was scarce. Now in her 50s, she is one of the head organisers of Ireland’s only PCOS charity called PCOS Vitality.
Maureen says that while awareness has improved slightly, the reality for many women remains largely unchanged.
“A lot hasn’t changed,” she said. “What surprises me is that even today, there hasn’t been much improvement in women’s healthcare in Ireland.”
PCOS is a lifelong metabolic disorder that affects hormone levels and can have wide-ranging impacts on a person’s physical and mental health. Maureen estimates that as many as one in six people in Ireland may have PCOS, however the research being done on the condition still remains incredibly limited. The condition stands as under-discussed, under-researched and often misunderstood.
Based in Belfast, the charity is run by just five volunteers who have come together locally to fill a gap they say has existed for far too long. “A few of us have got together here. We have stepped up to educate people about what PCOS is,” Maureen explained. The five women include Maureen Busby, Susanne Busby, Nisha Sharma, Sunila Siddiqui, and Mohinee Peer.
For many, PCOS is still thought of primarily as a reproductive issue, but Maureen stresses that this view is overly narrow. “It’s a lifelong metabolic disorder,” she said. “But it also affects things like people’s mental health.”
Symptoms can include irregular periods, fertility issues, weight gain, insulin resistance, and hirsutism – excess hair growth on the face and body.
“Some people have hirsutism,” Maureen said. “It can be really difficult for them; it can really affect their self-esteem.” The condition does not end with menopause either, something Maureen says many people are unaware of.
“People don’t realise that it can affect you even after the menopause,” she said. “We still don’t know what causes it, and there’s not enough research being done.”
Coming from a psychology background, Maureen is particularly conscious of the mental health burden many women carry alongside their diagnosis. “I find that mental health services are also so underfunded,” she said. “The Facebook group we have, are so people have somebody to talk to, it’s so important for their mental health.”
The charity began as a Facebook support group and has since grown into a multi-platform online presence, offering support to women across Ireland and beyond. Their social media has amassed over 4.5k followers on TikTok and 10.5k on Instagram, alongside YouTube content and online resources.
“It just got to the point where I felt there wasn’t any help out there,” Maureen said. “Not everybody has the option for private care, and everything our charity offers is free.”
From educational posts to peer support and signposting, the charity aims to support women physically, mentally and emotionally. “Everything on the charity’s website is free for girls to access any information they need,” she said.
The lack of education around women’s health, both in schools and in wider society, is something Maureen believes has had lasting consequences. “In school we aren’t really taught about women’s health,” she said, adding that this lack of early education can lead to delayed diagnoses, confusion and shame.
“It isn’t talked about enough,” she said. “Everybody forgets about PCOS.”
That silence, she says, can be isolating, not just for those diagnosed, but for their families too. “We have had parents asking what to do or say when their child has been diagnosed,” she explained.
In an effort to improve understanding, the charity has also worked with the Royal College of Surgeons (RCSI) in Ireland to develop an interactive game designed to test and improve people’s knowledge of PCOS.
The initiative aims to make learning about the condition more accessible and engaging, particularly for younger audiences. At its core, the charity’s mission is simple: to raise awareness, push for better healthcare, and remind women that their experiences are valid.
“We want to continue to raise awareness,” Maureen said. “Just remember, it’s not your fault if you’ve been diagnosed with PCOS. You deserve good healthcare just like everybody else.”
For Maureen, the work is personal and ongoing. More than two decades after her own diagnosis, she hopes the conversation around PCOS in Ireland will finally begin to change.
Until then, she and her fellow volunteers will continue to show up online every day, making sure women know they are not alone, even when the system forgets them.