Why renaming this common hormonal disorder is a huge deal

You probably know someone who has a condition that, until last week, was known as PCOS, or polycystic ovary syndrome. It affects one in eight reproductive-aged women. But despite it being such a common disorder, patients are often misdiagnosed and have delayed treatment. Now, medical professionals are trying to change that. After 15 years of work, the condition has been renamed to PMOS, or polyendocrine metabolic ovarian syndrome. The new name reflects the real driver of the condition: disruptions in hormones. But how much can changing a name really do? Click here https://www.mchri.org.au/guidelines-resources/community/pmos-resources-2/ to access resources about PMOS in multiple languages. Interested in more science? Email us your question at [email protected] mailto:[email protected]. Listen to every episode of Short Wave sponsor-free and support our work at NPR by signing up for Short Wave+ at plus.npr.org/shortwave http://plus.npr.org/shortwave. See pcm.adswizz.com https://pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences. NPR Privacy Policy https://www.npr.org/about-npr/179878450/privacy-policy

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• 0:00Speaker 00

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• 0:25Regina Barber?

  What's in a name? Seriously? Because that's the question at the heart of today's episode on PCOS, polycystic ovary syndrome. For nearly the last decade and a half, Dr. Helena Teed, an endocrinologist at Monash University, has been pushing to rename PCOS, a condition that affects roughly 1 in 8 reproductive-aged women. Because the name, it comes with some big problems. For one, the cysts in the name aren't actually cysts.

• 0:56Speaker 02

  100 years ago, when they were operating on women, they saw what they thought were cysts on the ovary that are not actually abnormal cysts. And then later, when they did ultrasound, they saw the same thing. And science had not caught up at that time and discovered what they really were.

• 1:10Regina Barber?

  They're tiny, immature follicles in people's ovaries. But even if they were cysts, those aren't the primary issues for this condition and aren't even required for a diagnosis, because the condition is driven by an array of hormonal disruptions, which means...

• 1:25Speaker 02

  The old name was fundamentally incorrect.

• 1:29Regina Barber?

  So as of May 12, 2026, say goodbye to PCOS and say hello to

• 1:37Regina Barber?

  PMOS, or polyendocrine metabolic ovarian syndrome. It's a name that captures the latest understanding of this disorder. It's genetic. And with it, people's hormones are disrupted, which, yes, can disrupt ovaries and reproductive health, but it can also disrupt lots of other things, like your metabolism, your skin, your mental health, so much more than just ovaries. And Helena says the issues with calling this condition PCOS was also clear to her when working with her patients.

• 2:09Speaker 02

  You can imagine. That saying to a young woman, you've got this disorder called polycystic ovary syndrome, but it's not your ovaries and you don't have real abnormal cysts. And it's not a primary ovary condition, but we'll call it polycystic ovary syndrome.

• 2:22Regina Barber?

  Another big problem is the disease's name dictates what research can be done about it.

• 2:27Speaker 02

  When you put it in a box, it means that any research that is done tends to be funded from that box about that box. There has been no medications ever developed in this condition specifically for anything other than the infertility features because there's been no research around it. When you don't do research, you don't have evidence. And education and information is woefully inadequate.

• 2:49Regina Barber?

  And that's had real consequences. According to the World Health Organization, up to 70% of people with the condition are undiagnosed. It's been a big motivator for Helena in the years-long push to rename PCOS. And she says changing the name is only the beginning. Her goal?

• 3:07Speaker 02

  Completely reclassifying the condition. So more research is done, better education that's brought up, better care, better outcomes. And that couldn't happen without the new name.

• 3:17Regina Barber?

  Today on the show, PCOS reimagined as PMOS. Plus, what that means for people with the condition and beyond. I'm Regina Barber and you're listening to Short Wave, the science podcast from NPR.

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• 4:53Regina Barber?

  So, Helena, if you could just kind of give us a picture, what is it like for a patient with this condition?

• 4:59Speaker 02

  So often, they are not necessarily recognized as having the condition. So, for example, a young adolescent woman will come in and she knows she's putting on a bit more weight than her peers, and often around her middle. So it's a body shape change. Then increased body hair in areas that females don't normally increase their body hair. They can get thinning of their scalp hair. They get increased acne. They can get increased pigmentation. All of those things affect the physical appearance of a young adolescent woman, who therefore can be quite affected by that. They also have irregular cycles, and so they're not the same as their peers at the same time. Because the other problem is they have really high prevalence of anxiety.

• 5:41Speaker 02

  They have increased mood disturbance and depression with this condition. So they're not feeling great about themselves often. They don't understand all of these changes.

• 5:50Regina Barber?

  Right. I can imagine it's already stressful to get this unclear diagnosis. And then I read that often, the treatment is birth control. But if that's also not explained, that's confusing too, right?

• 6:03Speaker 02

  Yeah, so they often start on the oral contraceptive pill or birth control pill, and they don't understand why. And then they think that's just the contraception. And there's a fair bit of pushback in the social media about the birth control pill or oral contraceptive pill. And in this condition, that's a big problem, because it's not working necessarily because it's a birth control pill. It actually is a really effective way to regulate the hormones in this condition, and therefore quite an effective way to tread a lot of those features we just discussed. But it takes time to work. So if women think they're just being placated by being put on the birth control pill, without understanding it's actually a hormone treatment for their condition, that's a real problem. Then there's other medications that moderate. The hormones that they're often not offered like metformin, which regulates insulin.

• 6:46Speaker 02

  So there's a range of medications that regulate hormones. And, you know, it's important that you understand the condition is hormonal before you regulate those hormones.

• 6:55Regina Barber?

  Okay, so I understand that the treatments for PMOS are different depending on whether a patient wants to get pregnant in the future or not. So what is that wider set of options?

• 7:04Speaker 02

  Yeah, so it does involve a contraceptive pill, which is a hormonal treatment, not necessarily just for contraception. Metformin, which addresses the insulin resistance. Anti-androgens can have a role and they address the androgen excess, although the birth control pill does that very effectively. Laser therapy is really good at controlling some of the skin symptoms as well as other treatments specifically for acne. But when we come to infertility, in this condition, really important message is that the majority of women with this condition will be able to have a family if they seek to have one. And so often, young women were told, oh, you've got this polycystic ovary syndrome, and that means you won't be able to have a family, which is devastating for a young woman and incorrect.

• 7:48Speaker 02

  We know from the research that most of them only need tablet treatment to improve their fertility, not expensive IVF. The medication therapy is not that difficult, and they often don't need to go on to tougher and more expensive forms of infertility treatment. But if they don't know that they've got the condition, they often plan their family a bit too late. And then you've got age-related effects on top of that, and the infertility doesn't get treated in a timely way. And they have higher risk of not having children.

• 8:18Regina Barber?

  That's fascinating. So basically, if they aren't diagnosed soon enough, like there's just this cascade of issues that will affect them as they get closer to like perimetapause and stuff like that.

• 8:28Speaker 02

  Yeah, it is really disempowering if they don't know about the condition and they don't understand what's happened to them and they don't understand the treatments that are relevant.

• 8:36Regina Barber?

  So Helena, it's taken over a decade to change the name of this condition to PMOS. Why did you fight so long for it?

• 8:45Speaker 02

  As a doctor, you work with people with the condition and for so long, you see them neglected, they struggle with trying to make the critical changes needed in terms of getting their care. And that means that day in, day out, I was exposed to the frustrations of the people I was caring for, but not just that. I had done research around the world on delayed diagnosis, dissatisfaction with care, poor provider experience, poor patient experience. Everyone was frustrated. So in doing the research that showed the problem, and then in leading the guideline, which pulled all the evidence together and just fundamentally showed this was just a wrong name, which was just harmful to everyone. So that's where we joined up with the patient groups

• 9:30Speaker 02

  and the health professional groups around the world and went on this journey together.

• 9:33Regina Barber?

  So previous efforts to change the name have failed. Why do you think this time it was different?

• 9:40Speaker 02

  The most important reason it has changed this time is because the critical evidence or science has just got so compelling now. We can no longer ignore it. Secondly, we brought everyone together. The question before was who had the right or the authority? What gives someone the right to change the name of a condition? There's so many different disciplines, so many different countries. And it couldn't just be one society or it couldn't just be one group because it's such a diverse condition. Previously, there'd not been enough engagement of patients with the condition. And that's really important because they have been quite frustrated with delayed diagnosis and people not listening to them for a long time. So building that trust and rapport and making sure they understood this was with them,

• 10:23Speaker 02

  for them and by them, in fact, not to them. And that is a huge difference. So here, we brought together all of the disciplines around all of the world regions, major engagement of patients and patient groups, and ended up with 22,000 survey responses in the multiple surveys and then published it in the most prominent medical journal.

• 10:44Regina Barber?

  Yeah, you talk about this like listening to patients and like taking this survey. What did they tell you that informed this decision? Like what really stood out?

• 10:53Speaker 02

  It's even the research before that where we had asked how long it took them to get diagnosed. I mean, different health professionals they had to see. What was their experience of care, good, bad or otherwise? Where did they get their information from? What was their experience? And it was woeful. Diagnosis can take two or three different providers. When they were diagnosed, they would just put on the pill and put in the ovary box. And all these other features they had were neglected. And it is really an indictment, unfortunately, that that historical framing and the system we have of putting something in a box, which means we don't research anything outside that. We don't provide education outside that. We don't create care pathways outside that. Has really done women a disservice.

• 11:38Speaker 02

  And I have absolutely no doubt that it happened because it was women's health. And it happened in the context of the historical problems we have with listening, recognizing and addressing issues in women's health more broadly.

• 11:51Regina Barber?

  Yeah, it seems rare for a condition to get a whole new name. And I imagine it's pretty hard to get everyone on board with this huge change. Can you tell me more about you and your colleagues' plan on implementing this change across the globe?

• 12:05Speaker 02

  Yeah, so the implementation is important. First of all, we have funding and resources, which are important. You can't just change your name. We have social media expertise and reach. We have media expertise and reach. We have people who are patient involvement experts, culturally and diverse experts in this space. We also have experts in lived experience on the journey. The steps are actually not difficult. Quite literally, it's a cascade of change the coding with WHO, which is already in progress. Changing the international guidelines, that's relatively easy because I lead those. Then there's a whole range of activities such as all the textbooks need to change, all the curriculum in all the universities, and that's already underway. All the training in the colleges. The resources are already produced in, I think, 20 different languages.

• 12:51Speaker 02

  We've written to all the major research funders and a whole range of. Journals have been notified to make sure that they only publish papers that are PMOS, brackets formerly PCOS, to make sure that that changes in research, but still retains historical links. So all the work that's been done before is not lost. So it's not just fixing the name. It's actually making sure we go much broader to all the features where there is poor awareness.

• 13:16Regina Barber?

  Wow. How do you feel? Like, this has gotten to a point where it's actually happening, right? Are you optimistic about the future?

• 13:24Speaker 02

  Yeah, it's unstoppable now. And recognizing that it is a necessary but not sufficient change really is critical. Once you get to this point, you now know that all the other things can cascade. But if we had not made this change, we just couldn't do it. We couldn't reclassify. We couldn't get the awareness. We couldn't get the acknowledgement of the broader condition. So I was incredibly proud to have the privilege of leading both of the international guidelines, to have made the contributions to research and knowledge on the condition that we've been able to do with colleagues around the world, especially understanding the poor experience that these women have and the features that they suffer with that are ignored. And then to have the opportunity to walk hand in hand with those

• 14:06Speaker 02

  with lived experience who've co-led this with us has been so critical. So yes, I am feeling very optimistic that this can only get better and really needed to take a step change to get there.

• 14:18Regina Barber?

  Well, Helena, congratulations on the success, and thank you so much for talking to us.

• 14:24Speaker 02

  Thank you so much.

• 14:32Regina Barber?

  If you liked this episode, share it with your friends. It really helps us out, and it helps us meet your friends. This episode was produced by Arud Nayar, edited by our showrunner Rebecca Ramirez and Tyler Jones checked the facts. I'm Regina Barber. Thank you for listening to Short Wave from NPR.

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