What’s in a name? When it comes to PCOS, a lot

Summary

Science Quickly | What’s in a Name? When it Comes to PCOS, a Lot

Date: June 5, 2026
Host: Rachel Feltman (Scientific American)
Guest: Dr. Anuja Dokras, Founders Professor of Obstetrics & Gynecology, Director of the Penn PMOS Center at the University of Pennsylvania

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Overview: The Renaming of PCOS

This episode dives into the recent, monumental effort to rename "Polycystic Ovary Syndrome" (PCOS) to "Polyendocrine Metabolic Ovarian Syndrome" (PMOS). Host Rachel Feltman talks with Dr. Anuja Dokras, a key figure in this 14-year international initiative, about the medical, social, and psychological motivations behind the rebrand, as well as its far-reaching implications for patients, clinicians, and research.

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Major Discussion Points & Insights

1. Why Change the Name?

[01:09 - 05:10]

• The name "Polycystic Ovary Syndrome" has long been considered misleading; many patients do not have cysts in their ovaries.
• The original term is nearly 90 years old (the first related paper dates back to 1935).
• "Cyst" carries worrisome connotations, leading to frequent misunderstandings and unnecessary patient anxiety.
• The condition is often wrongly considered purely a gynecological or fertility problem, overlooking crucial metabolic and psychological aspects.
• Quote (Anuja Dokras, 06:09):

  "There are no cysts in the ovaries... But a cyst has a very different connotation. You think, oh my goodness, it's something large, it may burst, it might twist. And we spend a lot of time counseling patients that's not what they have."

2. Tracing the Path to Change

[02:14 - 05:10]

• Discussions began as early as 2012 at an NIH meeting when a white paper recommended a name change.
• Surveys revealed patients often take 6 months to 2 years and see 3-4 doctors before diagnosis.
• Even clinicians lacked clear diagnostic guidance, spurring the creation of international guidelines (updated in 2023).

3. The Inclusive Process

[07:36 - 09:12]

• Patients led the demand for change; doctors, researchers, and even marketing consultants partnered with them.
• Key considerations debated: scientific accuracy, familiarity (should PCOS acronym be retained?), avoiding stigma.
• Surveys (over 22,000 respondents) and global stakeholder meetings (over 50 medical organizations, up to 90 representatives) created consensus.
• Quote (Anuja Dokras, 08:01):

  "The majority said they wanted something that was scientifically accurate, that was not stigmatizing, that would be sort of culturally appropriate."

4. Achieving Consensus

[09:12 - 10:57]

• A rigorous, multi-stage Delphi process built consensus.
• Global societies, patient support groups, and a diverse array of medical professionals (endocrinologists, pediatricians, GPs, etc.) were involved.
• Two further rounds of international, virtual meetings refined the final decision.

5. Addressing Pushback and Challenges

[11:01 - 12:30]

• Resistance came mostly from concerns about confusion and the cost of rebranding organizations and awareness efforts.

• Questions raised: Will old research be lost? How will the change be implemented and adopted globally?

• The process was inspired by other successful medical rebranding efforts (like fatty liver disease).

• Quote (Anuja Dokras, 11:29):

  "This is one of the largest efforts with over 22,000 surveys, over 50 different medical organizations—finally sort of 90 representatives coming together. So it was a tour de force."

6. Early Reactions and Next Steps

[12:30 - 13:12]

• Patient response has been overwhelmingly positive, especially appreciating the minimal yet meaningful change in the acronym.

• Social media is abuzz with support, describing the change as long overdue.

• Quote (Anuja Dokras, 12:43):

  "They are so pleased with the choice and also not having made a very drastic change... changing one letter in the acronym, it's going to convey so much more. Overwhelmingly, it has been a positive response."

7. Anticipated Impact

[13:12 - 14:56]

• The new name explicitly signals a condition affecting multiple endocrine and metabolic pathways, not just the ovaries.

• Aspires to broader recognition and earlier diagnosis by all kinds of doctors, not just gynecologists.

• Hopes for less stigma, clearer understanding for patients.

• Aims to open new funding and research avenues, including from heart health and endocrinology rather than women's health alone.

• Quote (Anuja Dokras, 13:22):

  "I'm hoping that when patients see their pediatrician... their internist... everybody takes a little bit of ownership and starts talking to the patient about it, asking questions about their symptoms, doing the diagnostic workup and not waiting for a patient to see a gynecologist... We're hoping that diagnosis may come earlier."

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Memorable Moments & Quotes

• "There are no cysts in the ovaries... But a cyst has a very different connotation." — Anuja Dokras [06:09]
• "The majority said they wanted something... scientifically accurate, that was not stigmatizing." — Anuja Dokras [08:01]
• "This is one of the largest efforts... So it was a tour de force." — Anuja Dokras [11:29]
• "Changing one letter in the acronym, it's going to convey so much more." — Anuja Dokras [12:43]
• "We're hoping that diagnosis may come earlier... it will be less confusing and stigmatizing." — Anuja Dokras [13:22]

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Key Timestamps

• 01:09 — Introduction to the name change and Dr. Dokras
• 02:32 — Historical context and origins of the push for change
• 05:25 — Problems with the existing term and evolving understanding of the syndrome
• 07:41 — The participatory, survey-driven rebranding process
• 09:22 — Achieving international consensus through the Delphi method
• 11:01 — Pushback and obstacles encountered
• 12:35 — Patient responses post-publication
• 13:17 — Broader hopes for improved diagnosis, destigmatization, and research funding

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Final Takeaway

The renaming of PCOS to PMOS is a landmark in medical communication, reflecting decades of research, patient advocacy, and international collaboration. This nuanced update aims to correct misconceptions, reduce stigma, and pave the way for better diagnosis, treatment, and research—beyond simply changing a letter in an acronym.

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For those interested in women's health, patient advocacy, and the evolution of medical language, this episode is both informative and inspiring, revealing how even the smallest semantic changes can have a profound real-world impact.

Transcript

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[Rachel Feltman]

For scientific american science quickly, I'm rachel feltman. As you may recall from one of our recent News Roundup episodes, the condition long known as polycystic Ovary syndrome, or pcos, is in the process of getting an official rebrand. The new name, which is Polyendocrine Metabolic Ovarian Syndrome, or pmos, was crafted with the intention of minimizing misconceptions about the disease and increasing the accuracy of diagnoses. But while changing one letter in an acronym might seem like a small shift, this new name is the result of years of international collaboration between clinicians, patients, and even marketing consultants. Today's guest, Anuja Dokris, was one of the leaders of this 14 year effort. She's the director of the recently renamed Penn PMOS center at Penn Medicine in Philadelphia. She's also the Founders professor of Obstetrics and Gynecology and Women's Health at the University of Pennsylvania. Thanks so much for coming on to chat with us today.

[Anuja Dokris]

Thank you for having me.

[Rachel Feltman]

In reading about this name change, I was really impressed at what a huge multi year international effort it was. I would love to start with just sort of when this began. When did you and your colleagues start to talk about this being an issue that needed to be addressed?

[Anuja Dokris]

Yeah, so this began in 2012. We had a meeting at the NIH, the National Institute of Health. It was a multidisciplinary meeting on pcos, as it was called then. We had made a significant amount of research progress and we wanted to share that with the nih, and they then produced a white paper. And in the white paper, the panel suggested that we should consider changing the name of PCOS because it really didn't reflect what we were seeing in terms of the research we had presented, in terms of the inaccuracies in the name, because there were no cysts in the ovaries in 2015. Then three years later, when I was the president of the Androgen Excess PCOS Society, that's a society which is international and it really focuses on research and education related to pcos, we had a separate session for the first time to sort of discuss name change. And for the first time we invited patients. The theme for my presidency was the Year of the Patient. And we invited the patients to come on in. They were advocates for everything that was happening in the field. But at the end of that session, the decision was it was too premature to change the name because a lot more needed to be done in the field. My group and others had just published surveys that showed that women were taking six months to two years to establish the diagnoses. And they were saying three to four physicians to even get a diagnosis. And then we surveyed physicians, clinicians, not just in the US but in Europe. And we found that a lot of the doctors did not even know what diagnostic criteria to use. It was too confusing. And so the mandate at that time was that we should come together and have international guidance for diagnoses, assessment, management of pcos. And that really was the priority of that time. And that's what happened. So the experts in the field got together and published the first international PCOS guidelines. They were updated in 2023 and that's when there was a resurgence. We've come a long way. Let's look at the name change issue again. And that's when we started again sending out surveys to get a sense of what did the patient. What do the clinicians and the healthcare providers think at this time now with all of these advances? And that's what finally led to the 2026 new name.

[Rachel Feltman]

And could you tell us some more about what was missing in the diagnostic criteria or the education around that Diagnostic criteria for clinicians? What kinds of things were you working on during that phase?

[Anuja Dokris]

The word polycystic has been there for decades. The very first paper that was published in this field was in 1935. If you do the math, it's more than 90 years ago. The title of that paper was just in a layman's word, it's amenorrhea. No menses in women who have polycystic appearing ovaries. From 1935, that word was stuck with this syndrome. There are no cysts in the ovaries. These are tiny follicles, they contain eggs within it. They're part of a woman's fertility. But on an ultrasound they could give an appearance of a little fluid filled sac. But a cyst has a very different connotation. You think, oh my goodness, it's something large, it may burst, it might twist. And we spend a lot of time counseling patients that's not what they have. And it takes away right from the time that I would rather tell the patient all the things I need to tell her rather than correcting the inaccuracies. So that was one major thing that was missing. And then the focus was that this is a gynecologic condition because we knew that the patients had irregular menses, heavy bleeding, dermatological, there were hair growth issues, acne. But again, my group and others has started to show that there was an increased risk of cardio metabolic issues. So by that I mean a higher risk of diabetes, higher risk of cholesterol issues, blood pressure and of course weight. And we were not spending enough time talking about that. And again, my group and others began to show an increased risk of psychological issues. So depression, anxiety, disordered eating, it affecting self image, body image. And again, that was sort of the lowest priority. There's no time to talk about any of that in a short consult with your doctor. So I think there were a number of reasons. Inaccuracy, advancing knowledge, research, and then the stigma that something that has a name that says polycystic ovary syndrome, all you think about is, oh, maybe it's going to affect fertility, reproduction. Even today that is stigmatized.

[Rachel Feltman]

And so once you started working on the name, what did that process look like?

[Anuja Dokris]

Yeah, so the process was very inclusive. It was really led by the patients asking for a name change and then the scientific and the clinical community coming together and partnering with them to say, how do we go about this? And we had built, built a coalition already when we built and wrote out the guidelines. So we had some framework to use and a foundation. And then the questions were, do we want a scientifically accurate name? Do we want a name that's just generic, like endometriosis, it's not talking about the pathophysiology, or do we want a name that'll keep the acronym PCOS? Because as we saw, for 90 years we've kept this. There was surveys sent out, people voted, they gave their opinion as to what would the preferences be. And the majority said they wanted something that was scientifically accurate, that was not stigmatizing, that would be sort of culturally appropriate. For the acronym that we could use easily, we had marketing input. They said, you don't want a huge change, you're going to confuse everybody, you want a subtle change, but that is still satisfying all the principles. And so there was a lot of discussion on a number of these points. To give you an example, we discussed including reproduction instead of ovarian and went back and forth and there was voting on that and everybody's opinion was taken. And then the decision was to keep ovarian syndrome.

[Rachel Feltman]

So once you had all of this survey data, all of this information, how did you actually come to a decision, you know, who had to give their buy in?

[Anuja Dokris]

The survey data was in different stages. And even the initial surveys that were done out to physicians and patients just about their experience of the diagnosis and management, we always included questions about the name change. We had longitudinal data. Then we did more recent ones in 23, 25, building on each one, depending on what the answers obtained were. This is referred to as a Delphi process, a very rigorous process in how one builds from one survey onto the next. Then at the time of the guidelines, There were about 38 societies that were part of it. We got buy in from more than 50 societies. These are medical professional societies. We invited them, as well as the patient support groups around the world, to send representatives to the final group, the steering group that made the decision and that voted based on the surveys. There were two other rounds of virtual meetings, but with international stakeholders. And a total of about 90 represented patients, represented clinicians, physicians. But if you think about it, because it is such a multidisciplinary syndrome, we had endocrinologists who are reproductive endocrinologists, pediatric endocrinologists, medical endocrinologists, GPs, pediatricians. Just from every walk of life there was a representative, which was phenomenal. And then we went through two more rounds of discussions till we finally came to the consensus.

[Rachel Feltman]

And have you gotten any pushback since making this public?

[Anuja Dokris]

For sure. And I think we heard some of the dissent along the way, but it was more. It's too premature. Right. And it wasn't the right time. Then as we went along the process, there are patient support groups, other advocates who have branded their societies with the name PCOS in it. I am the CEO of the Androgen Excess PCOS society. So we too will have to change, change our name. So that's one of the issues that comes up and then it's the implementation. Are we going to make it more confusing for our patients and other physicians? How long will it take to make the Change will the research that's been done so far, will we lose out on anything and how will it all get translated? These were great points that were brought along and we worked through each of these alongside the process, knowing that we would have to address all of this and we are not the first ones. Names have been changed in medicine prior to this. The most recent example that I can give you, it was a condition with the liver. It was commonly called fatty liver disease. And we had the framework from some of these other name changes. But this is one of the largest efforts with over 22,000 surveys, over 50 different medical organizations, finally sort of 90 representatives coming together. So it was a tour the force

[Rachel Feltman]

and how have patients been reacting to the change now that the work is published?

[Anuja Dokris]

It has been a phenomenal response, much beyond what we had expected on social media has just lit up with a number of people talking about it, saying this was long overdue. They are so pleased with the choice and also not having made a very drastic change. I think people are pleased that by just changing one letter in the acronym, it's going to convey so much more. Overwhelmingly, it has been a positive response. We are very happy. But we do know there's a lot of work to be done in terms of the other steps of implementation.

[Rachel Feltman]

And how do you hope to see this name change? Change things for patients?

[Anuja Dokris]

Yeah, in a number of ways. I'm hoping one is because of the increased awareness and the name itself tells us that it's not a gynecologic condition. I'm hoping that when patients see their pediatrician, the adolescent medicine doctor, because the condition starts early, when they see their gp, their internist, everybody takes a little bit of ownership and starts talking to the patient about it, asking questions about their symptoms, doing the diagnostic workup and not waiting for a patient to see a gynecologist. So we're hoping that diagnosis may come earlier. We're hoping that from a patient perspective it'll be less confusing and stigmatizing because now it's not all about these cysts in their ovaries then from a research perspective, currently, women's health in general, as you might know, receives only a fraction of funds, at least in the U.S. the funds that we get from the federal government and the NIH. And out of that fraction, the previous PCOs and now PMOs got even a smaller fraction of the funds. It was mainly funded by the institutions that supported women's health. But at this point, we are hoping that institutions that support heart health, endocrinology, dermatology, Others will also be interested in making and supporting advances in research. Hopefully, there are multifold benefits that will come from this from a patient perspective, from a clinician's perspective, from a researcher's perspective. But time will tell.

[Rachel Feltman]

That's all for today's episode. We'll be back on Monday with our weekly science News roundup. Science Quickly is produced by me, Rachel Feltman, along with Fonda Mwangi, Sushmita Pathak and Jeff d'. Alvisio. This episode was edited by Alex Seguiera, Emily Mikowski and Erin Shattuck. Fact check our show. Our theme music was composed by Dominic Smith. Subscribe to Scientific American for more up to date and in depth science news For Scientific American, this is Rachel Feltman. Have a great weekend.