When Neelam Heera-Shergill was diagnosed with polycystic ovary syndrome (PCOS) at 18, she feared it would stop her becoming a mother. "I'm never going to have children. That's it, my life is over," she recalled. The condition affects about one in eight women in the UK, yet Neelam, from Birmingham, says she was left with little understanding of what her diagnosis actually meant.
That's why she supports renaming PCOS to polyendocrine metabolic ovarian syndrome (PMOS) earlier this year, alongside a recommendation for annual health checks to improve diagnosis and long-term care. The NHS says PMOS, which affects millions of women, can impact hair growth, periods, fertility, and mood.
For Neelam, the diagnosis sent her down a "rabbit hole" of fear. Not long after starting university, she began experiencing irregular and painful periods, thinning hair, weight gain, and exhaustion. "My periods were so irregular but when I had them they were extremely painful, massively fatigued," she said. "I kept going back and forth to the GP... I went quite a number of times because it was affecting me going into lectures and things because I was exhausted."
She was advised to exercise more and lose weight, but her symptoms soon affected her studies, causing her to miss lectures and re-sit exams. She was eventually diagnosed with PCOS, having "never heard" of it before. "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. "It was just dropped in a conversation and I was kind of left to figure it all out by myself."
Neelam set up Birmingham-based charity Cysters to tackle inequalities in menstrual, maternal, and menopausal health. She later had a daughter - a "really big surprise." She says the renaming, which supporters say is "more representative" of how the condition affects the whole body, could help improve understanding, but there's still a "long way to go." "PCOS itself wasn't even understood. So PMOS is also something that's going to be really misunderstood as well," she said. "If that name change means those conversations come more to light, then I'm all for it."
Rochelle Lewis, 31, from Wolverhampton, struggled with facial hair growth, painful periods, and anxiety. "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 said. "One of my mum's friends, she was like, 'oh, maybe she's got PCOS.' So that was the first time I'd ever even heard of it, and I was probably about 16."
Rochelle first raised concerns as a teenager but felt dismissed. "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. She was finally diagnosed in 2025 - a process she described as "frustrating" and "emotionally draining, not to be listened to, not to be heard." Now a mother to a seven-month-old son, she says too often women are diagnosed and then left to navigate the condition alone. "So you get told, you get given your diagnosis and that's it... we're just left to it," she said. "We need to have processes put in place to actually help us."
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 monitor symptoms, treatment, and longer-term health risks. "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. The health watchdog said the advice aimed to improve consistency of care, increase awareness, and support earlier diagnosis and management. The final guideline is due on 27 January.
Dr Rima Smith, clinical associate professor of reproductive medicine at Birmingham Women's Hospital, said PMOS is "so much more than an ovarian or gynaecological condition." "It's a cardiometabolic condition," she explained. "PCOS never accurately represented the condition in so many ways. It had never captured the complexity and the fact it is a multi-organ, lifelong whole-body condition." She added that women with PMOS often receive fragmented care, and annual checks could include diabetes, thyroid, and menstrual function tests, as well as ensuring treatments are working. "We know a large proportion of women with PMOS have a healthy weight so it's not entirely weight-driven," she said.
Annual reviews are the follow-up both women say was missing. "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." Rochelle agrees they're a step in the right direction but says more change is needed. "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.