The Condition Medicine Misnamed: Why PMOS could rewrite the narrative

I wonder when women’s health will catch up, if ever. Maybe not in my lifetime, but the latest break- through for women’s health is the renaming Polycystic ovarian syndrome (PCOS) to polyendocrine metabolic ovarian syndrome (PMOS), as announced in the Lancet: a global nod to the endocrine and metabolic ramifications of the condition, and moving away from the view that it is merely a gynaecological problem. Who am I, why do I care, and shall I step off my soap-box now?

Well no, not yet at least. PMOS is having its moment, and I am pretty chuffed about it. I’m a registered dietitian, women’s health researcher, and knowledge mobilisation fellow with NIHR. I’m also a patient with lived experience of PMOS. I’ve been in the system and I work in the system, and I have to say I really hope that this step is a catalyst for change, but 10 years of working in the NHS may mean I don’t hold my breath.

Why the pessimism you may ask? Well, some of the statistics are pretty bleak. Only 5% of research funding is spent on women’s health. There is approximately a 17-year translational gap between evidence publication and change to clinical practice. Throw in the fact that until recent years, women were excluded from clinical research due to hormone fluctuation, and you have a perfect storm for why women’s health is so far behind. 14% of the population have type 2 diabetes, 13% of the population have PMOS. Which one has more awareness, licensed medication, and multiple pathways and services for support? This is the gap I am working to improve for PMOS

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I’ve worked across acute, community, and primary care services and understand the complex NHS system relatively well. Most recently, I joined primary care to build a new primary care dietetic service across 32 GP practices in Westminster. In doing so, I conducted a needs analysis: a process used to identify gaps between an organisation's performance and their desired outcomes. It may come as no surprise that women’s health was identified. I started to notice more and more women with heavy menstrual bleeding, PCOS (at the time), weight management concerns, mental health concerns, and menopause being booked into my dietetic clinic, mostly requiring a listening ear, words of encouragement, and holistic support.

During that time, I was diagnosed with PMOS after having years of symptoms and thinking there was something wrong with me. Upon diagnosis, I was told “we don’t need to check your bloods, you’re slim, your bloods are probably fine, but come back when you struggle getting pregnant.” It dawned on me, as a dietitian who eats well, exercises regularly, and works within healthcare that I’d just been diagnosed with a chronic condition, of which, not many seem to know about and there is no cure... oh and does this mean I can’t have children now? Why is it that within the system this is an acceptable stance to take upon diagnosis “come back when you struggle having children”? Unfortunately, this highlighted a common issue alongside “you just need to lose weight” within the evidence and the All Party Parliamentary Group formal inquiry.

So, what can we do to shift that narrative and work towards something more helpful, more meaningful, and more empowering when discussing PMOS? Well, quite a lot as luck would have it.

Nutrition is a key factor; obviously as a Dietitian, I’m hugely interested in this. But it’s not just about weight loss. Given up to 70% women with this condition are insulin resistant, glycaemic load (a measure of how carbohydrates in food impact blood sugar levels) and low glycaemic index foods (carbohydrate foods that have a slower release of glucose and therefore less increase in blood sugar levels) can help. Chronic inflammation is an issue, so intake of anti-inflammatory foods (oily fish, avocados, olive oils) matter. Gut disturbance is common, and so having a diverse intake of plants, wholegrains, nuts, and seeds can help. Micronutrient deficiency is associated with higher levels of period pain and so correcting this using food first with some of the aforementioned examples is a great step.

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Now onto the double-edged sword of sleep disturbance, which is common in women with PMOS. How is this relevant you ask? Well, hormone imbalances including elevated androgen levels and insulin resistance interfere with the circadian rhythm and the body’s internal clock; this can lead to delayed sleep onset and negatively affect deep sleep quality. You will be pleased to know that sleep disturbances can also lead to insulin resistance, weight gain and inflammation, so PMOS really is the gift the keeps on giving. Hopefully, you’re catching my drift as to why women are in need of proper support? I’ll carry on, just in case…

One of the least talked about impacts of — but in my view, well worth some of the spotlight — is the mental health impact. Hormonal and inflammatory imbalances can affect brain chemistry, causing mood swings and emotional distress. Low self-esteem and poor body image are extremely common and up to 52% women experience anxiety and 51% experience depression. Compared to women without PMOS, those with this condition are 3 times more likely to experience depression and 5 times more likely to experience anxiety. A final but important point, is that women with PMOS are 3-6 times more likely to experience eating disorders… unlikely helped by being told “you need to lose weight” without any further conversation, guidance, or support.

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So, with the new name giving a nod to the plethora of other impacts, I hope to see better training for healthcare professionals to ensure they are better equipped to have consultations that treat women with the holistic care they desperately need. It feels there is light at the end of the tunnel. Even without condition specific services, there is real opportunity to change the narrative and treat women and their complex symptoms properly — with care and empathy. I hope for more research funding allocated to women’s health, and more compassion within the system.