The NHS missed my diagnosis for years – so I spent £5,000 on treatment in Belgium

Women with polyendocrine metabolic ovarian syndrome (PMOS) should undergo annual NHS checks to detect and manage the wide range of health complications associated with the condition, according to new guidance issued by the National Institute for Health and Care Excellence (NICE). This recommendation comes amid growing concerns about the underdiagnosis and inconsistent management of PMOS, which affects approximately one in eight women in the UK. Previously known as polycystic ovary syndrome (PCOS), the condition was officially renamed in May 2024 to better reflect its broader systemic effects beyond the reproductive system.

The NICE draft guidance outlines a comprehensive approach to diagnosing and managing PMOS, emphasizing the importance of early detection and regular monitoring. The condition, which is a leading cause of female infertility, presents symptoms such as irregular or absent periods, excessive facial and body hair, weight gain, hair loss, oily skin, and acne. These symptoms can significantly impact both physical health and mental well-being, with depression and anxiety commonly reported among those living with PMOS. The guidance also highlights the increased risk of long-term conditions such as diabetes and cardiovascular disease, underscoring the necessity of ongoing surveillance.

Despite affecting up to four million women in the UK, PMOS remains underdiagnosed and inadequately addressed within the NHS. Many individuals report experiencing delays in diagnosis and limited access to appropriate care. For example, Yasmin Gharbi, a 32-year-old civil servant, struggled for years to receive a correct diagnosis and effective treatment for PMOS. Her initial symptoms—unexplained pain and irregular periods—led to a series of misdiagnoses and ineffective interventions. Eventually, a scan revealed a cyst on her fallopian tube, followed by the unexpected diagnosis of PMOS. However, the lack of adequate information and support from NHS services forced Gharbi to seek treatment abroad in Belgium, where she incurred an estimated £5,000 in expenses. In contrast, her Belgian consultants provided thorough explanations and personalized care, highlighting the disparity in treatment approaches between the two countries.

Similarly, Emily Mee, a 29-year-old woman, faced repeated dismissals from NHS professionals despite persistent symptoms. Her journey to diagnosis began with years of irregular periods and inconclusive tests. It wasn't until she presented her symptoms to an emergency department via ChatGPT—a tool she used to explore potential causes—that she received a tentative suggestion of a ruptured ovarian cyst linked to PMOS. Despite raising this concern, she was initially misdiagnosed with a urinary tract infection and sent home without further investigation. Only after prolonged discomfort did she eventually secure a proper diagnosis.

The NICE guidance aims to address these gaps by promoting standardized diagnostic protocols and encouraging healthcare providers to consider PMOS in women of all ages, including those post-menopause. It also emphasizes the importance of culturally sensitive care, noting that PMOS appears more prevalent among women of Black, Asian, and mixed ethnic backgrounds. The proposed annual check-ups would cover both immediate symptoms and long-term risks, while also offering lifestyle recommendations to mitigate complications. Although there is currently no cure for PMOS, existing treatments such as hormonal therapy and fertility medications can help manage symptoms effectively.

The draft guidance is now open for public and professional feedback until 11 August 2026, with the final version expected to be released in December 2026. If implemented, the new recommendations could lead to improved patient outcomes, greater awareness of PMOS, and more consistent care across the NHS. As advocates like Gharbi continue to highlight the shortcomings of the current system, the hope is that these guidelines will mark a turning point in how PMOS is understood and managed within the UK healthcare framework.