Why renaming this common hormonal disorder is a huge deal

Summary

Podcast Summary:

Short Wave (NPR)
Episode: Why renaming this common hormonal disorder is a huge deal
Date: May 20, 2026
Host: Regina Barber
Guest: Dr. Helena Teede, Endocrinologist, Monash University

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Episode Overview

This episode explores the recent renaming of PCOS (Polycystic Ovary Syndrome) to PMOS (Polyendocrine Metabolic Ovarian Syndrome) and the significance of this change. Host Regina Barber and guest Dr. Helena Teede discuss why the previous name was problematic, the impact it has had on research and patient care, and what the new name means for those affected by the condition. The episode highlights the broader implications of naming in medicine, the patient experience, and the collaborative, global push for change.

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Key Discussion Points & Insights

1. Why the Name Matters

• Misleading Terminology:

  • The term “Polycystic Ovary Syndrome” is inaccurate; the so-called ‘cysts’ are really tiny immature follicles, not true cysts.

    “100 years ago, when they were operating on women… what they thought were cysts on the ovary that are not actually abnormal cysts.” — Dr. Teede [00:56]

  • These “cysts” aren’t required for diagnosis, and ovarian disruption is only one part of a larger hormonal disorder.

    “Even if they were cysts, those aren’t the primary issues for this condition and aren’t even required for a diagnosis.” — Regina Barber [01:10]

  • The previous name limited research and treatment focus to the ovaries, neglecting other health impacts.

• The New Name - PMOS:

  • Announced on May 12, 2026: Polyendocrine Metabolic Ovarian Syndrome.
  • Reflects the updated scientific understanding that this is a genetic, hormonal, and metabolic disorder.

    “It 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.” — Regina Barber [01:30]

2. Impacts on Research, Diagnosis, and Treatment

• How Name Influences Research:

  • Disease names ‘box’ a condition, influencing research funding and direction.

    “When you put it in a box, it means that any research that is done tends to be funded from that box… There has been no medications ever developed in this condition specifically for anything other than the infertility features.” — Dr. Teede [02:28]

• Consequences for Patients:

  • 70% of people with the condition remain undiagnosed, per WHO.
  • The confusing and inaccurate name leads to delayed diagnosis, inadequate treatments, and emotional stress.

    “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…” — Dr. Teede [02:09]

  • Treatment is often limited to birth control pills without proper explanation, causing misunderstanding and mistrust.

    “They often start on the oral contraceptive pill… they don’t understand why… it actually is a really effective way to regulate the hormones in this condition.” — Dr. Teede [06:04]

3. Patient Experience

• What Living with PMOS Looks Like:

  • Physical symptoms: weight gain (especially abdominal), body and facial hair growth, thinning scalp hair, acne, increased pigmentation, irregular periods.
  • Mental health: high prevalence of anxiety, mood disturbances, depression.

    “All of those things affect the physical appearance of a young adolescent woman who therefore can be quite affected by that… they don’t understand all of these changes.” — Dr. Teede [05:01]

  • Social stigma and lack of clear information increase distress and confusion.

• Treatment Beyond Birth Control:

  • Treatments include hormonal pills, metformin (for insulin resistance), anti-androgens, laser therapy for hair and acne, and fertility treatments if required.
  • Most women with this condition can have children with appropriate, often simple, medical therapy (not usually IVF).

    “Most of them only need tablet treatment to improve their fertility, not expensive IVF.” — Dr. Teede [07:05]

4. Why Change Took So Long

• Past Barriers:

  • Lack of coordinated authority; different countries and specialties involved.
  • Insufficient patient participation in the process.
  • Not enough compelling scientific evidence to challenge the status quo.

    “Previously there’d not been enough engagement of patients… Building that trust and rapport and making sure they understood this was with them, for them and by them…” — Dr. Teede [09:41]

• What Made This Effort Successful:

  • Compelling evidence from updated science.
  • International cooperation: input from experts, patients, and survey responses from 22,000 participants.

    “Here we brought together all of the disciplines, major engagement of patients and patient groups, and ended up with 22,000 survey responses…” — Dr. Teede [09:41]

5. Implementation and Future Outlook

• Plans for Global Change:

  • Steps include updating WHO codes, medical textbooks, university curricula, clinical guidelines, research funding language, and journal terminology.

    “The coding with WHO, which is already in progress… all the textbooks need to change, all the curriculum in all the universities and that’s already underway… all the resources are already produced in, I think, 20 different languages.” — Dr. Teede [12:06]

• Ongoing Ambition:

  • The name change is the foundation for broader changes—reclassifying the disease, improving awareness, diagnostics, funding, and patient care.

    “It really needed to take a step change to get there.” — Dr. Teede [13:25]

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Notable Quotes and Memorable Moments

• On the False Assumptions about Fertility:

  “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 young women, and incorrect.” — Dr. Teede [07:05]

• On Why Listening to Patients Matters:

  “Diagnosis can take two or three different providers… When they were diagnosed, they were just put on the pill, put in the ovary box, and all these other features they had were neglected.” — Dr. Teede [10:55]

• On the Historical Neglect of Women’s Health:

  “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.” — Dr. Teede [11:41]

• On Optimism for the Future:

  “Yeah, it’s unstoppable now and recognizing that it is a necessary but not sufficient change really is critical… So yes, I am feeling very optimistic that this can only get better.” — Dr. Teede [13:25]

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Timestamps for Important Segments

• PCOS Naming & Definition Issues: [00:15]–[02:09]
• Research Impact & Misconceptions: [02:23]–[03:17]
• Patient Experience—Symptoms & Mental Health: [04:54]–[05:52]
• Issues with Treatment and Understanding: [06:04]–[06:56]
• Fertility and Broader Treatment Options: [07:05]–[08:19]
• Challenges and Breakthrough in Renaming: [08:46]–[10:46]
• Patient Involvement and Gender Bias: [10:55]–[11:53]
• Implementation of Name Change Globally: [12:06]–[13:18]
• Closing Thoughts & Outlook: [13:18]–[14:26]

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Conclusion

This episode provides a concise, insightful look at how a seemingly small shift—the renaming of a medical condition—can have enormous ramifications for scientific research, patient care, and social attitudes. Dr. Helena Teede’s work highlights the importance of accurate terminology, collaborative advocacy, and centering patient experience in driving progress in women’s health. The transition from PCOS to PMOS not only reframes the disorder scientifically but sets the stage for better recognition, broader research, and more empathetic care for millions of people worldwide.

Transcript

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[Regina Barber]

You're listening to Short Wave from NPR. 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 one in eight reproductive aged women. Because the name, it comes with some big problems. For one, the cysts in the name aren't actually cysts.

[Dr. Helena Teed]

100 years ago, when they were operating on women lace, or 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.

[Regina 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 the

[Dr. Helena Teed]

old name was fundamentally incorrect.

[Regina Barber]

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

[Dr. Helena Teed]

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.

[Regina Barber]

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

[Dr. Helena Teed]

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 that when you don't do research, you don't have evidence and education information is woefully inadequate.

[Regina 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 Halina in the years long push to rename pcos, and she says changing the name is only the beginning. Her goal?

[Dr. Helena Teed]

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

[Regina 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 Shortwave, the science podcast from npr.

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[Regina Barber]

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

[Dr. Helena Teed]

So often they are not necessarily recognised 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 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. The other problem is they have really high prevalence of anxiety. They have increased mood disturbance and depression with this condition. So they are not feeling great about themselves often. They don't understand all of these changes.

[Regina Barber]

Right. I can imagine it's already stressful to get this, like, 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?

[Dr. Helena Teed]

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 for 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 treat 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 hormone that they're often not offered, like metformin, which regulates insulin. So there's a range of medications that regulate the hormones. And, you know, it's important that you understand the condition is hormonal before you regulate those hormones.

[Regina 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?

[Dr. Helena Teed]

Yeah. So it does involve a contraceptive pill, which is a hormonal treatment, not necessarily just for contraception. Metformin, which addresses the insulin resistance, antiandrogens 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 young women, and incorrect. 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 risk of not having children.

[Regina 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 perimenopause and stuff like that.

[Dr. Helena Teed]

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.

[Regina Barber]

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

[Dr. Helena Teed]

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

[Regina Barber]

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

[Dr. Helena Teed]

The most important reason it has changed this time is because the critical evidence or something science has just got so compelling now we can no longer ignore it. Secondly, we've 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. Time. So building that trust and rapport and making sure they understood this was with them 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.

[Regina 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?

[Dr. Helena Teed]

It's even the research before that where we had asked how long it took them to get diagnosed, how many 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 were just put on the pill, 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. 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, recognising and addressing issues in women's health more broadly.

[Regina 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?

[Dr. Helena Teed]

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, cultural, linguistic, diverse experts in this space. We also have experts in lived experience on the journey. The steps are actually not difficult. It quite literally is 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. We've written to all the major research funders and a whole range of journals have been notified to make sure that they only published 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. Wow.

[Regina Barber]

How do you feel like this has gotten to a point where it's actually happening? Right. Are you optimistic about the future?

[Dr. Helena Teed]

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 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.

[Regina Barber]

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

[Dr. Helena Teed]

Thank you so much.

[Regina Barber]

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

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