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. "I'm never going to have children. 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. 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. The NHS said PMOS, which affects million of women, was a health condition that could affect hair growth, periods, fertility and mood, external.
For Neelam, finding out she had the condition sent her into what she described as a "rabbit hole" of fear and uncertainty. Not long after beginning university, she started 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." 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.
"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 was inspired to set up Birmingham-based charity Cysters to help tackle inequalities in menstrual, maternal and menopausal health. She later went on to have a daughter, which she said was a "really big surprise".
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". "PCOS itself wasn't even understood. So PMOS is also something that's going to be really misunderstood as well," she said.
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