Chapter 1: What is polycystic ovary syndrome (PCOS) and who does it affect?
This is The Guardian.
I first went to the doctor when I was about 14 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 maybe bled through the back of my dress or something. I just felt different from everybody.
Chapter 2: Why did campaigners want to rename PCOS to PMOS?
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 continued. Rachel realised 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 travelled to the conference where we announced it.
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Chapter 3: What are the symptoms and challenges of living with PMOS?
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 excited.
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?
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Chapter 4: How does the new name PMOS reflect the condition's true nature?
From The Guardian, I'm Madeleine Finlay, 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.
Chapter 5: What are the underlying hormonal causes of PMOS symptoms?
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 polycystic 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 follicles. So in the ovary, in healthy women without PCOS, every month your follicles 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, those little sacs.
That's so interesting. And you said there that this is ultimately a hormonal condition. So what's the underlying cause of PMOS symptoms?
So in a way, I think it's worth looking at... so the condition as a whole, and its new name really reflects the cause there, polyendocrine.
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Chapter 6: How can someone get diagnosed with PMOS?
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 hormones. 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 hormones.
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?
Chapter 7: What misconceptions exist about PMOS and its treatment?
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. It's unlikely to be 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 suggest 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 going to 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, it's based on what's called the Rotterdam consensus.
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Chapter 8: What impact could the name change from PCOS to PMOS have on patients?
And the idea is that women need to have two out of three symptoms. kind of checkboxes, as it were, to meet the sort of diagnostic criteria. So this could be polycystic ovaries, although, 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 specifically about my periods. I felt like there was something wrong, but the doctor, who's the expert, didn't see that. I got told that, well, periods are pretty awful anyway, so why are you worried about it? Or you might be someone that just has 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 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 only to be told that that probably wouldn't happen and so yeah I spent the next
Few weeks just sad and depressed and isolating 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.
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