Women welcome annual check for debilitating condition
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Neelam Heera-Shergill founded charity Cysters to provide support she felt was missing after her diagnosis When Neelam Heera-Shergill was diagnosed with polycystic ovary syndrome (PCOS) at the age of 18, she feared it could one day stop her becoming a mother.
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"I'm never going to have children.
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That's it, my life is over," she said. The condition affects about one in eight women in the UK, yet despite its broad impact on health and wellbeing, Neelam, from Birmingham, said she was left with little understanding of what her diagnosis really meant.
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It is one of the reasons she supports the decision to rename PCOS to polyendocrine metabolic ovarian syndrome (PMOS) earlier this year, alongside a recommendation for annual health checks to improve diagnosis and long-term care.
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The NHS said PMOS, which affects million of women, was a health condition that could affect hair growth, periods, fertility and mood, external.
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Cysters, based in Birmingham, holds monthly events to support women with the condition For Neelam, finding out she had the condition sent her into what she described as a "rabbit hole" of fear and uncertainty.
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Not long after beginning university, she started experiencing irregular and painful periods, thinning hair, weight gain and exhaustion.
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"My periods were so irregular but when I had them they were extremely painful, massively fatigued," she said.
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"I kept going back and forth to the GP...
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I went quite a number of times because it was affecting me going into lectures and things because I was exhausted."
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Neelam described how she was advised to exercise more and lose weight, but her symptoms soon began affecting her studies, causing her to miss lectures and re-sit exams. She was eventually diagnosed with PCOS, having "never heard" of the condition before.
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"It was the comment of 'it'll be difficult for you to have children, but we'll cross that bridge when we come to it'," she explained.
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"It was just dropped in a conversation and I was kind of left to figure it all out by myself."
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Neelam was inspired to set up Birmingham-based charity Cysters to help tackle inequalities in menstrual, maternal and menopausal health.
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She later went on to have a daughter, which she said was a "really big surprise".
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The charity founder said the renaming of the condition, which supporters said was "more representative" of how it affected the whole body, could help improve understanding, but there was still a "long way to go".
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"PCOS itself wasn't even understood.
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So PMOS is also something that's going to be really misunderstood as well," she said.
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"If that name change means those conversations come more to light, then I'm all for it." Rochelle Lewis said years of symptoms and appointments left her feeling unheard For many years, Rochelle Lewis, from Wolverhampton, struggled with facial hair growth, painful periods and anxiety.
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"I've always struggled with a lot of facial hair growing up, it was something I was really bullied about, so I tried to do absolutely everything I could to try and get rid of it," she explained.
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"One of my mum's friends, she was like, 'oh, maybe she's got PCOS'.
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So that was the first time I'd ever even heard of it, and I was probably about 16."
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Rochelle said she first raised concerns about PCOS as a teenager, but felt they were dismissed.
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"So I went to the doctors and they literally just brushed it off and were like, 'no, we don't think you've got PCOS'," she said. The 31-year-old was finally diagnosed with the condition in 2025, a process she described as "frustrating".
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"It was emotionally draining, not to be listened to, not to be heard," she said.
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Now a mother to a seven-month-old son, she said too often women were diagnosed and then left to navigate the condition alone.
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The name change alone wasn't enough, she added.
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"So you get told, you get given your diagnosis and that's it... we're just left to it," she said.
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"We need to have processes put in place to actually help us."
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Annual health checks would have helped manage the condition, Rochelle said In July, the National Institute for Health and Care Excellence (NICE) published draft guidance for the NHS, recommending an annual review for women with PMOS, to help monitor symptoms, treatment and longer-term health risks.
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"Recommending a simple annual review is an important step towards ensuring people get the ongoing care and monitoring they need," said Marie Anne Ledingham, consultant clinical adviser for women's and reproductive health at NICE.
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The health watchdog said, external the advice aimed to improve consistency of care, increase awareness and support earlier diagnosis and management, with the final guideline due to be published on 27 January.
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Dr Rima Smith, from Birmingham Women's Hospital, said PMOS was a "multi-organ, lifelong whole body condition" Dr Rima Smith, clinical associate professor of reproductive medicine at Birmingham Women's Hospital, said PMOS was "so much more than an ovarian or gynaecological condition".
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"It's a cardiometabolic condition," she explained.
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"PCOS never accurately represented the condition in so many ways.
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It had never captured the complexity and the fact it is a multi-organ, lifelong whole-body condition."
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She added that women with PMOS were often cared for through fragmented services and that annual health checks could involve diabetes, thyroid and menstrual function checks, alongside making sure any treatment was working.
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"We know a large proportion of women with PMOS have a healthy weight so it's not entirely weight-driven," she said.
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Polycystic ovary syndrome (PCOS) is now called polyendocrine metabolic ovarian syndrome (PMOS) Annual reviews are the sort of follow-up both women said was missing after their diagnosis. "It's great to have annual check-ups if those annual check-ups are looking at the wider picture of what PCOS is doing rather than the lose weight aspect or go on the pill or eat better," Neelam told the BBC. "If that bit changes, then an annual check-up is absolutely welcome," she said.
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For Rochelle, annual reviews are a step in the right direction but further change to care is needed.
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"I think if I was to have had a review yearly, then symptoms that were being missed would have been diagnosed, it would have been able to be looked into, and I would have had a clearer picture," she said.
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Women with PMOS should have yearly NHS checks, says health watchdog PCOS name change 'more representative of condition' Women with painful condition 'ignored' by doctors Advice for PCOS has not changed for 30 years, says patient
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