Can a name change transform PCOS outcomes for women?
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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.
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.
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?
MUSIC
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.
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.
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Chapters
8 chapters
1
What is polycystic ovary syndrome (PCOS) and who does it affect?
0:00–1:19
2
Why did campaigners want to rename PCOS to PMOS?
1:19–2:29
3
What are the symptoms and challenges of living with PMOS?
2:29–3:05
4
How does the new name PMOS reflect the condition's true nature?
3:05–3:54
5
What are the underlying hormonal causes of PMOS symptoms?
3:54–5:37
6
How can someone get diagnosed with PMOS?
5:37–6:17
7
What misconceptions exist about PMOS and its treatment?
6:17–8:10
8
What impact could the name change from PCOS to PMOS have on patients?
8:10–16:05
Speakers
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