Welcome to ASRM Today, a podcast that takes a deeper dive into the current topics in reproductive medicine. I'm Jeffrey Hayes, and today it is a special bonus episode of ASRM Today for this season. I'm joined as always by my co-host, Dr. Lowell Koo.
Hi, everyone. Good to have you here. Fantastic.
We are jumping into PMOS today, and our guest is Dr. Anuja Dokris. How are you today? I'm good. Thank you for having me.
Wonderful. So, I'll start with the very big question, why this change? How did this happen? The change was long coming and long overdue. So, if I have a minute to just go down history lane to remind everybody, and our readers for sure may remember that a long time ago, this condition was called Stein-Leventhal syndrome, and then it was changed to polycystic ovary syndrome.
So, the name has been with us for a long time, but the first time these polycystic ovaries was described was 1935, and that name just remained. Over the years, we've realized that it's not accurate. We don't see patients with polycystic, there are no large cysts within these ovaries.
In fact, as reproductive endocrinologists, we know that these are small, tiny androphollicles in the ovaries, and this is a misnomer. So, it was a long time coming because of the inaccuracy, and then over the last three or four decades, there's been a lot of research in this field, and that research has told us that in addition to the gynecologic issues like the irregular bleeding, the risk of endometrial hyperplasia, we know that there's subfertility, infertility, but my group and others have also shown increased risk of cardiometabolic risk factors, and there's some data now of an increased risk of actual cardiovascular events, and then again, my group and others have shown increased risk of mental health disorders. So, we understood the breadth of this syndrome a lot more, and hence, that was another impetus for change, and finally, the patients.
The patients are the biggest advocates. They have been asking for a name change for a while because they feel it's impacted their care, and so, a long time coming. Excellent.
Thank you for that review of the history. That definitely is a trip down memory lane. So, tell me, does the polyendocrine metabolic portion of the name, does that suggest a broader hormonal and metabolic involvement than previously recognized, and that's why we named it that? Absolutely.
Yeah, you're spot on. So, the polyendocrine gives us the information that this is not just one organ that's making it. So, we recognize that the ovaries are primarily responsible for the hyperandrogenism, but the adrenal glands are also responsible.
We also know that the adipose tissue, which is an endocrine organ, plays a major role in terms of the metabolic complications within the ovaries. So, really, it is multiple endocrine organs that are playing a role. We also now understand, well, we've always recognized the role between the brain and the ovary, right? From the very beginning, we knew this was an LHFSH dysregulation, but over time, we now have understood that AMH has receptors in the brain as well, and there is another link between the ovary and the brain.
There's a link between adipose tissue and the brain, the gut and the brain. So, really, truly a multisystem disorder. So, polyendocrine, I think, is befitting.
And then the metabolic, again, you know, we know that the underlying pathophysiology is insulin resistance, but with that has come obesity, hypertension, dyslipidemia, diabetes, and now, unfortunately, data on heart disease. So, the entire spectrum of cardiovascular risk factors. And we see that, right? When our patients get pregnant, the higher risk of preeclampsia, gestational diabetes is all reflecting that metabolic milieu.
Wonderful. Thank you. Do you think that this might change or improve diagnosis rates or reduce misdiagnosis? That's what we hope.
We hope that there will be early diagnoses. So, the syndrome really presents itself in the late teen years or in adolescence. And a lot of patients do complain that it's been either not diagnosed, misdiagnosed for long periods of time till they finally have had the diagnoses.
It really shouldn't be the REI where the patient has tried to get pregnant for a year and now is so far down her fertility journey making that diagnosis for the first time. We did a survey a while ago where we showed that patients were taking between six months and 24 months to reach the diagnoses and were hopping between different healthcare professionals three or four before the diagnosis was established. So, I do hope with this change, the diagnosis would be made early on.
Maybe pediatricians, adolescent medicine doctors will pick it up. It'll be the gynecologist internist, you know, as patients see them. And then finally, if they need, they don't always need to see an REI, but it should not be for the first time that the fertility specialist, sure, if they come to us as a reproductive endocrinologist or a medical endocrinologist, that can be part of the diagnostic workup.
But it should happen much early on so that we could introduce preventive strategies, educate them, and have them in a much healthier place if they are contemplating a pregnancy. I think one of the things that kind of at first confused us and confused the patients was, does this name change just simply represent a name change? Or is there something deeper that changes? Or is it just like, okay, all the criteria is still the same. To diagnose it, it's just a name change that we have a deeper understanding that this is bigger than just polycystic ovaries.
Right. And I think, and that's a very important question that has been asked for a while. And that's why the name change did not occur 10 years ago.
So the process began. The mandate to change the name came from an NIH conference in 2012. And so it's taken us this long to make the change.
I think at that time, it would have just been a cosmetic change. But now, over these 10 to 12 years, there are international guidelines which reinforce our diagnostic criteria, assessment, management. The guidelines have been updated.
There's a lot of research. We have a better understanding about the genetics, epigenetics associated with PCOS. We understand, as you know, the fertility, reproductive outcomes, and the broader outcomes.
So building on that then, what was left was this name, which was a misnomer. We made so much progress that we needed to keep up with that progress and reflect that in the name as well. So I do think it's not cosmetic.
And it's really, it's supported by the evidence. And we hope that not only is it beneficial for our patients, as I described with earlier diagnoses, taking away that inaccuracy. I hope it's better for us as doctors because there'll be a more coordinated care for them between the pediatricians, OB-GYN, internists, and then us as reproductive endocrinologists, the medical endocrinologists, of course.
And finally, the biggest hope is that there'll be more funding. We have so many more unanswered questions. And till now, it's really been a women's health condition alone.
And funding, as you know, is so limited for women's health that as we look across the multisystem aspect of the syndrome, I'm hoping more institutes within the NIH here for the U.S. will fund it and there'll be a win-win, right, for everybody. What steps are currently being taken to sort of educate health providers and patients about PMOS? Yeah. So there's a whole implementation plan that had to be put in place because you can't just change the name of a disease and expect, you know, tomorrow everybody would know about it.
We're not the first by any means. So name change has occurred. Like, for example, in our own field, we've changed premature ovarian failure to POI.
Like, we've made those smaller changes. In liver, there was a condition, fatty liver disease or non-alcoholic fatty liver disease, and they changed it to Mast-LD. So again, we were not the first by any means, but it's one of the largest and sort of the international effort that's happened.
And so you need to have an implementation plan where one needs to, and the different aspects of an implementation plan are making everybody aware, right, that the change has occurred. That's one of them. And this occurs in today's day and age much easier through social media.
As you said in your introduction, social media has just been a light with all of this. It's medical organizations being involved, and ASRM has played a major role in a number of things that have happened with PMOS, but originally PCOS along the way. They were one of the original sponsors for the guidelines, and then again, you know, for the updates of the guidelines.
When we sent out surveys for the name change, we sent it out through SREI, which is part of ASRM, as you all know. And so ASRM has been a partner, and what I was most pleased about was the board endorsed this name and had a big announcement a week after we published the paper. I think it was one of the first societies to do that.
So implementation includes medical societies like ASRM and others, either endorsing, participating, sending that information out to their members so they are aware of it as well, and then, you know, the research communities and getting it out to the funding bodies, foundations, and the importance. This is, again, being done through having sessions at medical society meetings and, you know, talking about PMOS and why it's not just PCOS and the breadth of it. And I think the other work has been done along the way in terms of the research, because you need the science to support all of this.
And as I said, that's been coming along, but it did not have that good partnership with branding, if I might use that word. But there's a lot more to implementation, you know. In addition, we need to make changes to the ICD codes, and that's starting this year, and will go on next year, SNOMED, because you don't want to lose out on the research that's been done, and all of it needs to flow very smoothly.
I think we've had a great start, though, and thank you for, you know, hosting me on this show, because this is one of the ways that we do the implementation. Yeah, no, thank you as well. Finally here, for humans who have been diagnosed already with PCOS, and now with the name changed to PMOS, is there anything that they should know? Is that just a name change and everything else is the same? Or what should they know about this? Yeah, and there was a lot of thought that went into that, because you don't want the patients to feel that there was another group that just made this decision and changed the name of their condition.
They are the people with the lived experience. So this effort has been led with three very strong partners. One is the patient group, and they have been very strong advocates in terms of name change, and the leading patient support group has been from the UK, but there are patient support groups in all countries.
Then we needed a sort of structure and a framework for leadership to make this occur, and so that came from Australia, and Helena Teed, who has led the guidelines, also led this and had funding. And then there is a society called the Androgen Excess, was called the PCOS Society, and that'll change with time, which is a society that engages in research and education associated with PMOS, and we've worked very closely with ASRM all along. And so I'm the current CEO, but along with the current president.
So these were the three arms that led it, but we always had the patients in response to your questions, because they have the lived experience guiding us along this pathway. What is it going to look like when we change the name? They were the advocates in asking for a name change, but now that we are going to change it, and depending on what we choose as the different words, how does it impact the patient? Culturally, is there a stigma associated with it? So there's a lot of discussion about whether we use, for example, the words reproduction versus ovarian, and would something be stigmatized? What do these acronyms look like or sound like in another language when they're translated? So patient input was really taken in great depth. And so again, for the patient who might be listening or knows that one letter has changed, it's bigger than that, because they really need to be talking to their physicians, care providers as to the different aspects.
If somebody hasn't addressed the metabolic aspect, or you and I know the fertility aspect doesn't get addressed so many times, or the impact of the environment, weight, obesity on outcomes down the road, these are not addressed. So I'm hoping patients can go back now and say, hey, have you addressed PMO, all aspects of it? And if they have, then that's wonderful, right? That's where we want to be. Absolutely.
And for practitioners, we're going to probably get a load of questions here at ASRM via email and social media, probably about areas such as coding or changes in the literature. How is this shaping up? How is this looking? Yeah. And so it's a process.
When disease names have changed in the past, one has to apply to change the ICD codes for coding. And there are certain times of the year when that can occur. And so this is occurring now.
It'll start in 26 and most likely be finalized in 27. And then the same way for research papers. And when you do a research search, how does one, do you put in PMOS and will the PCOS publications pull up? And so all of that process has also been initiated.
It's going to take a little while to complete all of these processes. But along the way, I think these were the concerns that were rightly raised and all of them were sort of noted and there's an action plan for most of these things as we go along. Thank you for your leadership.
And thank you for basically putting a, shedding a light on PMOS and making it basically much more broad in terms of what it is. And so that patients can really understand what's going on with themselves. And so, and it's, it's not every day that you change the entire world by changing your name.
So thank you for doing that. So thanks. I think the patients that will really tremendously benefit from this.
Thank you for having me. Absolutely. And I'm just, I'll echo that.
Thank you. Thank you for taking time out today to be on the show, to bring such wonderful information forward. As I'm sure more and more questions will come up in the coming weeks and months.
Hopefully this will serve as some help in answering some, some questions. If you have questions for us about this episode or any other episode, please email us asrm at asrm.org or education at asrm.org. And until next time, I'm Jeffrey Hayes. And I'm Lowell Coo.
We'll see you then. This is ASRM Today. This concludes this episode of ASRM Today.
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