Women living with polyendocrine metabolic ovarian syndrome (PMOS) have welcomed new guidance recommending annual health checks, describing the move as a long-overdue shift toward consistent, long-term care.
The National Institute for Health and Care Excellence (NICE) published draft guidance in July advising the NHS to provide yearly reviews for patients. The recommendation aims to monitor symptoms, track treatment effectiveness, and manage broader health risks associated with the condition.
For many women, the current system leaves them to manage a complex, lifelong illness alone. The new protocol addresses a gap that advocates say has left patients feeling unheard and poorly supported.
From PCOS to PMOS
The condition was renamed earlier this year from polycystic ovary syndrome (PCOS) to PMOS. Medical experts argue the old name was misleading because it focused solely on the ovaries, whereas the condition affects multiple organ systems.
Dr Rima Smith, a clinical associate professor at Birmingham Women’s Hospital, described PMOS as a cardiometabolic condition that impacts hair growth, menstrual cycles, fertility, and mood. She noted that the previous terminology failed to capture the complexity of the illness.
“PCOS never accurately represented the condition in so many ways,” Dr Smith said. “It had never captured the complexity and the fact it is a multi-organ, lifelong whole-body condition.”
The name change and the push for annual reviews are intended to improve awareness and ensure earlier, more accurate diagnosis. The final guideline is scheduled for publication on 27 January.
Personal experiences of missed care
Neelam Heera-Shergill, founder of the charity Cysters, was diagnosed at age 18. She described being left with little understanding of her condition after a doctor casually mentioned that having children would be difficult.
“It was just dropped in a conversation and I was kind of left to figure it all out by myself,” Heera-Shergill said. She experienced irregular periods, thinning hair, weight gain, and exhaustion, which caused her to miss university lectures and re-sit exams.
Heera-Shergill supports the renaming to PMOS because it better represents how the condition affects the whole body. She believes the new name could help spark necessary conversations, though she warns that public understanding will still take time to develop.
Rochelle Lewis, 31, from Wolverhampton, faced similar challenges. She first raised concerns about her symptoms as a teenager but felt her concerns were dismissed by doctors. She was not diagnosed until 2025.
“It was emotionally draining, not to be listened to, not to be heard,” Lewis said. She noted that women are often given a diagnosis and then left to navigate the condition without ongoing support.
The need for ongoing monitoring
Both women emphasized that annual health checks must look beyond weight loss advice or contraceptive prescriptions. Dr Smith pointed out that a large proportion of women with PMOS have a healthy weight, meaning the condition is not driven solely by lifestyle factors.
Annual reviews should include checks for diabetes, thyroid function, and menstrual health, alongside assessments of current treatments. This holistic approach is what patients say they have been missing.
“It’s great to have annual check-ups if those annual check-ups are looking at the wider picture of what PMOS is doing rather than the lose weight aspect,” Heera-Shergill said.
Lewis agreed, stating that yearly reviews would have helped identify missed symptoms earlier. She believes the new guidance is a step in the right direction but stressed that further changes to care processes are still needed.
“We need to have processes put in place to actually help us,” Lewis said.
Source: BBC
