Polycystic Ovarian Syndrome is being rebranded to promote greater awareness of what the condition truly involves. Over the coming three years, the international healthcare sector will be adopting the name Polyendocrine Metabolic Ovarian Syndrome, or PMOS.
For those unfamiliar with the condition, it might be difficult to grasp why this revised name matters so much. But for me, it feels like validation at last. The updated name offers hope that women will identify their symptoms earlier, that medical professionals will appreciate its genuine impact and that those living with this chronic condition will feel seen.
Based on my own journey, and accounts from others I know who share this diagnosis, PMOS is often dismissed as a more trivial issue in medical environments. The way I received my NHS diagnosis highlights just how insignificant doctors can perceive it to be. In 2023, I stepped out of a work meeting to discover a voicemail from an unknown number that merely stated: 'Sorry to say you have polycystic ovarian syndrome. You will be referred for treatment in due course.'
So much time had elapsed since my last test that I'd entirely forgotten I was waiting for this call. Fortunately, it wasn't a shock. I had already been diagnosed in South Africa seven years earlier, but I needed an NHS diagnosis to access my medication. However, the thought of anyone receiving this life-changing diagnosis over voicemail is deeply distressing. I may be one of the lucky few that had any knowledge of what it even meant. It's also not an insignificant number of people getting this call; 3.1 million people in the UK, roughly one in eight women and girls, have PMOS according to Verity.
The name PCOS conjures alarming images of large, threatening cysts on one of the most personal areas of the body. This is entirely misleading, however, and is partly why the name change has been proposed. As the NHS website clarifies: 'Despite the name, you do not actually have cysts if you have PCOS.' In reality, it is fluid-filled follicles surrounding the eggs, rather than cysts, that interfere with the hormonal cycle. Despite the condition affecting all hormones, including insulin, something the new name reflects, patients are typically informed about fertility issues first. Even on the NHS website, fertility problems are prominently listed in bold, while the risks of diabetes, depression, heart disease, stroke and sleep apnoea are relegated to the smaller print beneath.
Overlooking the wider symptoms of PCOS not only undermines the significant impact the condition has on everyday life, but it can also delay diagnosis by years, as many people simply fail to recognise their own symptoms. Personally, I had no idea I was experiencing symptoms until the very moment of my diagnosis, largely because my concerns had been dismissed as 'teenage issues' for years. Extreme fatigue and putting on weight were brushed off as 'laziness', while insulin resistance and an uncontrollable appetite were labelled a 'discipline problem'. Acne and thinning hair on my head were attributed to 'bad hygiene habits', while dark, excessive hair growth elsewhere was supposedly down to Mediterranean genes in my family. But the symptom that concerned me most was having just one or two periods a year, often lasting a mere day or two at best. Yet multiple doctors insisted it was simply 'typical for teenagers'.
These are all endocrine and metabolic signs of PMOS, and hopefully highlighting them so clearly in the revised name can help young women and girls identify, articulate and champion their own health concerns far better than I managed. This could potentially result in swifter diagnosis and treatment. Receiving treatment for PMOS transformed my life entirely. While PMOS has no cure, treatment typically involves several medications to rebalance hormones, with most patients prescribed metformin, a drug commonly used for type 2 diabetes.
Once on the medication, I no longer required 12 hours of sleep daily to feel barely functional, nor did I need multiple servings at mealtimes because of constant hunger. I lost two dress sizes in under three months, and the dramatic mood fluctuations that had wreaked havoc on my mental wellbeing - to the extent I needed medication - began to subside. Just identifying my condition suddenly made sense of so many smaller issues I was dealing with, like moonface or having virtually no eyebrows. It also enabled me to find hope through the stories of others online like Harnaam Kaur, who in turn taught me how to handle the symptoms medicine couldn't fix.
