Rachel Feltman: For Scientific American’s 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—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 Dokras, 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 Founder’s Professor of Obstetrics and Gynecology and Women’s Health at the University of Pennsylvania.
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Feltman: Thank you so much for coming on to talk with us today.
Anuja Dokras: Thank you for having me.
Feltman: In reading about this name change, I was really impressed at what a huge, multiyear, you know, 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?
Dokras: Yeah. So this began in 2012. We had a meeting at the NIH, the National Institutes 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.
And so in 2015, then, three years later, when I was the president of the Androgen Excess–PCOS Society—so 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 diagnosis, and they were seeing three to four physicians to even get a diagnosis. And then we surveyed physicians, clinicians, not just in the U.S. 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 guidelines for diagnosis, 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 community, what did the clinicians and the health care providers think at this time now, with all of these advances, and that’s what finally led to the 2026 new name.
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?
Dokras: So the word polycystic has been there for decades. So the very first paper that was published in this field was in 1935. So if you do the math, it’s like more than 90 years ago. And the title of that paper was, just in a layman’s word, it’s amenorrhea—no menses—in women who have polycystic-appearing ovaries.
And so from 1935, that word was stuck with this syndrome. And there are no cysts in the ovaries [in this syndrome]. 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 know, 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 had started to show that there was an increased risk of cardiometabolic 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 gonna affect fertility, reproduction, and even today, that is stigmatized.
Feltman: Hmm. And so once you started working on the name, what did that process look like?
Dokras: 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 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, right? 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, you know, we’ve sort of kept this.
And so there were 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 gonna confuse everybody. You know, 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.
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?
Dokras: So the survey data was in different stages, and even the initial surveys that were done out to physicians and patients just about their experience with the diagnosis and management, we always included questions about the name change. So we had longitudinal data, and then we did more recent ones in ’23, ’25, building on each one, depending on what the answers obtained were, and this is referred to as a Delphi process—so a very rigorous process in how one builds from one survey onto the next.
And 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. And so 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.
So 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 endocrinology, GPs [general practitioners], pediatricians—you know, 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.
Feltman: And have you gotten any pushback since making this public?
Dokras: For sure. You know, and I think we heard some of the dissent along the way, but it was more, “Is it 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, you know, with the name PCOS in it.
I am the CEO of the Androgen Excess–PCOS Society, so we, too, will have to 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? And these were great points that were brought along, and we worked through each of these alongside the process, knowing that, you know, we would have to address all of this.
And we’re 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. [Editor’s Note: The condition is now called steatotic 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 de force.
Feltman: And how have patients been reacting to the change now that the work is published?
Dokras: 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 gonna convey so much more.
So 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.
Feltman: And how do you hope to see this name change change things for patients?
Dokras: 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. And 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’re hoping that institutions that support heart health, endocrinology, dermatology, others will also be interested in making and supporting advances in research.
So hopefully there are multifold benefits that’ll come from this from a patient perspective, from a clinician’s perspective, from a researcher’s perspective, but time will tell.
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 DelViscio. This episode was edited by Alex Sugiura. Emily Makowski and Aaron 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!
