Impact of Renaming on Future Care

This is the guardian . I first went to the doctor when I was about fourteen years old to talk about why my periods had started but were months and months and months apart unlike all of my peers at school. And I was told that I was young they would regulate as I got older and not to worry about it . The experience Rachel is describing might be familiar to a lot of women. She didn't know it at the time, but she had PCOS, polycystic ovary syndrome. According to the World Health Organization, an estimated 10 to 13% of women at reproductive age are affected. 70% don't know they have the condition . Through Rachel's teenage years, more symptoms appeared. Really bad acne that would come out of nowhere that was much more extreme than any of my friends were getting or bleeding out of nowhere and not being prepared for it, having to tie a jumper around my waist because you know I'd maybe bled through the back of my dress or something. I just felt different from everybody. As she got older, Rachel started to gain weight that she struggled to keep off . After years of trying to work out what was going on, she finally got a diagnosis, PCOS. But the confusion, misconceptions, and inadequate medical treatment continu ed . Rachel realized there was one major problem underlying it all. The root cause is the name . Through the charity Verity, Rachel got involved in the effort to rename PCOS. This is a collective kind of decision of over 22,000 people, patients and healthcare professionals from every continent on the world. Following more than a decade of workshops, surveys and consultations, last week a new name was announced. I was on stage announcing it alongside some of the most incredible healthcare experts. And when the moment came, there was a round of applause from hundreds of endocrinologists from around the world that traveled to the to the conference where we announced it. Honestly, I could cry. I probably will cry right now. It was really, really emotional. We came off and we were buzzing. People were so excit ed. It's now called PMOS . That single letter difference might seem minor, but for those with a condition it signals the beginning of something really significant. We really feel so strongly that this is the key to unlocking all the change that needs to happen . So today, why has PCOS become PMOS . From The Guardian, I'm Madeline Finley, and this is Science Weekly. Nicola Davis, as science correspondent, you've been writing about why polycystic ovary syndrome, or PCOS, has been renamed to polymetabolic ovarian syndrome or PMOS . So what is PMOS? It's a multifaceted condition. So women who have it often have irregular periods, sometimes no periods, irregular ovulation, sometimes there's excess hair, so facial hair, body hair, sometimes acne, sometimes weight gain. So lots of different features. Yeah, so there's this range of symptoms that you've described that you might experience even at different points in your life, if you have this condition, but even though it was called polycystic ovary syndrome, you didn't mention polycystic ovaries there. I mean, they aren't really, I guess, then the defining feature of this condition and in fact I was amazed to read in your piece they aren't really cysts at all. Yeah it's a problem that the old name was quite misleading. So the first word there was poly cystic. And the problem with this was. First of all, it put all the emphasis on the ovaries, when as I've said there are lots of different manifestations, and it's actually it's a hormonal disruption essentially that's going on. So that's where the polyendocrine part of the new name comes from. The endocrine system is our hormonal system. And then this idea of polycystic was a problem. So back when researchers were first looking at the ovaries of people who had this condition, they saw these sort of little fluid-filled sacs. And it's thought that's where this idea that they were cysts came from. But actually they're not cysts. So the phrase polycystic is a problem because they're not cysts at all. They're actually essentially kind of paused follicules. So in the ovary, in healthy women without PCOS, every month your follicle start to develop and then one eventually matures and it releases an egg. But in people with PCOS or PMOS as it's now known, some of these follicles become paused, and that's what you're seeing uh those little sacks. That's so interesting. And you said there that this is ultimately a hor monal condition. So so what's the underlying cause of PMOS symptoms? So in a way I think it's worth looking at sort of the condition as a whole and its new name really reflects the cause there, polyendocrine. So this is about the endocrine system or the hormonal system. And in particular, women with PMOS have an excess of androgens, and these are so-called male sex hormon es. So these are hormones that are found in higher levels in men than in women, but are also found in women. But there's an excess of them often in women with this condition. And that causes an imbalance in other hormon es. You also have things like more insulin resistance, so you can have high levels of insulin. High levels of insulin also increase the production of androgens. So you can see it's like a kind of complex picture. And are there any theories as to why people end up with this condition? What's ultimately behind it? So research is ongoing to kind of unpick why some people have PMOS. We know that it can run in families, so that suggests genes might play a role. And it's unlikely to be like a single gene, it's likely to be many different genes that were involved. But there are other potential factors as well. So there's genetic factors, there might be some nurture factors as well in there. There are studies, particularly in animals, that suggests that if you've got an exposure, greater exposure, to those male sex hormones in the womb, that might increase the risk of offspring having PMOS Nicola, if someone was experiencing the symptoms like the ones Rachel and you have described, how would they go about getting diagnosed? As with many things, if you've got a concern about your health , then a trip to your GP is the first port of call. And that's also because there are lots of things that can be done to help people with PMOS. I think it's important to mention that a lot of women have experienced difficulties when they've sought medical care around this condition, sometimes about being believed about symptoms or getting the right diagnosis. But still going through medical channels is the correct way to go. There's also a great community out there of people with this lived experience and lots of resources and support there as well which is worth looking at too. And so if you're sat in front of your GP, how are they gonna go about things? Is it talking through the symptoms and kind of assessing what's going on or are there kind of biomarkers that they look at? The way the condition is currently diagnosed, and this hasn't changed even with the name change, is based on what's called the Rotterdam Consensus. And the idea is that women need to have two out of three kind of check boxes as it were, to meet the sort of diagnostic criteria. So this could be polycystic ovaries, although if we as we've said polycystic doesn't really describe what's going on, but they're still called that for now. Irregular periods or biochemical or clinical manifestations of high levels of androgen. Of course what this means, and this is one of the reasons why the name change is so important, is it means you can have PMOS without polycystic ovaries. So you might not have those fluid-filled sacs in your ovaries, but still have this condition . This is key. Plenty of healthcare professionals get very little training on what PMOS actually is. There's still a misconception that it's all about cysts on the ovaries. That can happen, but it's a different, separate medical issue And it means that when people go to their doctors, they often don't get the help or guidance they need, which is what happened to Rachel . In total, I went about six times to the doctor to ask about specifically about my periods. I felt like there was something wrong, but the doctor who's the experts didn't see that. I got told that um well periods are pretty awful anyway, so why are you worried about it? Or you might be someone that just has regularly irregular periods and that's your lot. Eventually, after relocating from Australia to the UK, Rachel saw a doctor who suspected PCOS and sent her for blood tests and an ultrasound. She finally received a diagnosis. But the follow-up care that I got was non-existent. It was here's a printout from the internet about PCOS. It was two pages long. I still have it somewhere because it was so shocking. I've kept it all this time. I was told that I probably wouldn't be able to have children. It's a lifelong condition. But if I decided I wanted to try at some point to come back and there might be something that they may be able to do to help me. And I just at that moment felt kind of m the bottom crash out of my world because that is all I had ever wanted to do. That's the only thing I knew I wanted to do with my life was to have kids. I need to be told that that probably wouldn't happen . And so yeah, I spent the next few weeks just sad and depressed and isolat ing myself from everything . Coming up. Why a rename could change everything Conversations around PMOS often centre on fertility. Because of its old name, the condition was put in the reproductive box, thought of as a single organ problem. But the new name reflects that it's not only a reproductive condition, but a dermatological, psychological, hormonal, and metabolic one too. Rachel. People think because you are overweight that you are, you know, leading a really unhealthy lifestyle and sure there's unhealthy choices and things and having anxiety and depression or fatigue or sleep apnea or all of these things, mental health struggles as well, because of what you're going through compounds on this kind of issue. But there is very real insulin resistance connected to the condition. So having to go into the doctor and say hey can you help me I'm really struggling what can you do and being told that you need to go and do that on yourself like just go away eat less move more that's a really big misconception. And 75% of patients that we survey through our patient consultation survey say that they feel like the experts on PCOS when they're having an encounter with a healthcare professional about their condition. And that's just not good enough. This also means women might not receive appropriate care. Treatments that can help manage symptoms or reduce long-term risks associated with weight gain and irregular periods. And there are effective treatments for fertility problems, despite what Rachel was told. For a long time she delayed trying, but as she puts it, her biological clock stopped ticking and started swearing at her. You know, I call them each my little miracles because they really feel like it. And I think that that would be a message that I would love for other people to know is that it's not a condition of infertility, like they have been led to believe. There may be difficulties, but you know, if you have intervention and help early enough in life that that can happen for you. But it's not everybody's goal either. And even if children are something you want, the condition doesn't magically go away once you've had them. When Rachel got involved with the PCOS now PMOS charity Verity, she quickly realized all the problems around the understanding, diagnosis, and treatment of the cond ition ultimately came back to the name. And so a decade-long campaign began to work out what it should be called. Patients have really truly had a seat at the table for this entire process. I'm actually really thrilled at the name. It acknowledges the lifelong nature of the condition, the metabolic and hormonal aspects of the condition, and the reproductive as well without being stigmatizing . Nicola, what kind of impact could this name change have? Why have patients and experts been fighting for this for so long? Basically, why is it important? There's a couple of different reasons why this is important. First of all, PCOS was a misleading name. It's a hormonal, metabolic condition. Uh there's all sorts of other health implications from increased risk of cardiovascular disease, type 2 diabetes, all sorts of other things there. And what really struck me as well was something that Professor Helena Teed mentioned. Now, Helena Teed is an endocrinologist from Monash University and she basically has led the charge on this name change. And she said when she was announcing this name change, she was saying, you know, does it matter if we change the name? And she said it does because in policy, in funding, in research, in education, and in health system care, everything is structured around which box you put a condition in. If you put a condition in the incorrect box, everything flows from there. If you don't get it right, if you don't label it correctly, then how it's viewed in the medical community, how it's viewed in research communities, funding, policy, and in the patient community, all of that comes from the name. So I think it's more than just sticking a new label on, it's really changing the way that condition is viewed and considered . A huge thanks to Rachel and to Nic ola Dav is. You can read more about this story at thegardian.com, and you can find Rachel's charity at verity- pcos .org.uk And that's it for today. This episode was produced by me Madeline Finley. It was sound designed by Joel Cox, and the executive producer is Ellie Bury. We'll be back on Tuesday. See you then .