Ep 196: Why PCOS Is Now Called PMOS with Dr. Kimberley Thornton
Fertility Forward Episode 196:
PCOS has a new name, but what does that actually mean for patients? In this episode, Dr. Kimberley Thornton, reproductive endocrinologist at RMA of New York, explains why polycystic ovarian syndrome (PCOS) has been renamed polyendocrine metabolic ovarian syndrome (PMOS) and why the change better reflects the condition. She clarifies what has changed, what hasn't, and how the new terminology may reduce confusion and lead to earlier diagnosis. Dr. Thornton breaks down the current diagnostic criteria for PMOS, its metabolic and hormonal features, and why irregular ovulation affects fertility. She also addresses common misconceptions, including why not everyone with PMOS has ovarian cysts, and reviews treatment options ranging from lifestyle changes and medications to fertility treatments. Discover what this updated definition means for patients and fertility care!
Rena: Hi everyone, we are Rena and Dara, and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice from medical professionals, mental health specialists, wellness experts, and patients because knowledge is power and you are your own best advocate.
Dara: Hi everyone. So excited today to have back on our podcast Dr. Kimberly Thornton, one of our esteemed reproductive endocrinologists here at RMA. And we're having an interesting discussion because there is a new definition for PCOS that was announced back in May. So we are having her on today to share with us why there's these new changes. So thank you for being here.
Dr. Thornton: Well, thank you for having me. It's always a pleasure to be on the podcast. And yeah, so the PCOS has been officially renamed to PMOS. So PCOS, you know, originally stood for Polycystic Ovarian Syndrome. And now the new name will be PMOS stands for Polyendocrine Metabolic Ovarian Syndrome, which will be definitely a better representation of the disorder. And so I think the concern is PCOS always, I always would tell patients it's a horrible name for the disorder. It makes people very confused. They think they have you have to have a bunch of pathological cysts on your ovary, which isn't actually true. It's that we would see a lot of what we call follicles on the ovary, and they would tend to cluster in the periphery, and there would be high numbers of them, but they're not really cysts in the sense of you need surgery, you need to have them removed, or sometimes people have spontaneous ones that resolve. These are, these follicles are little fluid uh pockets that have actual eggs that are one floating in each one of them. So it was more that someone wasn't ovulating regularly and we could kind of see signs of that on ultrasound. But it is really a metabolic disorder. It's associated with things like prediabetes, higher risk for cardiovascular disease. There is these GYN components of this irregular ovulation, which is the bigger link with infertility, but the hope is the name change will be more inclusive and will lead to less confusion and faster diagnosis for patients.
Rena: Well, so let's talk about exactly what PMOS is. And so, the artist formally known as PCOS. If that is something that you are diagnosed with or you hear that this is what you have presenting, what exactly does that mean?
Dr. Thornton: So, like the medical, how we are diagnosing PMOS or PCOS, like the treatments, there, nothing there is staying the same. So sorry, nothing there is changing. Everything there is staying the same. So I think that that's confusing as some people think maybe the diagnostic criteria or treatments are different. And so traditionally, most GYN’s, we use something called the Rotterdam criteria to diagnose PMOS or as you said, you know, previously PCOS. And those three criteria are is one is what we call like irregular menstrual cycles or oligoamenorrhea. So when somebody doesn't have menstrual cycles typically every month, often may have cycles more than 35 days apart or less than eight menses per calendar year. The second diagnostic criteria is signs of elevated androgens, which are like male hormones, things like testosterone or DHEAS. And this can be clinical, meaning people may suffer more from cystic acne or hair growth on their face, abdomen, or belly, or sometimes like hair thinning on our actual like head where you know we want thicker hair. Or sometimes we see these elevations in the blood, and so it could be one or the other, meaning somebody may have elevated testosterone level in their blood, but they don't notice these signs of elevated androgens, and that checks the box, or they may have the physical symptoms, but we don't see the elevations in the blood, so it could be one or the other or both. And then the third was what we would call like polycystic ovaries on ultrasound, which is truly that we would see a lot of these follicles, and like traditionally we would say 12 or more on one ovary, although as ultrasound technology has expanded, the criteria is a little bit looser, whether it should be higher than that, or we can use elevated AMH levels, has also been suggested for you know, clicking that box of the diagnostic criteria. And a patient only has to have two out of the three to be technically diagnosed with PMOS, but it is what we call a diagnosis of exclusion, meaning you need to rule out other medical causes that may have symptoms similar, so like elevated TSH or abnormal thyroid functioning, something called like a hyperprolactinemia or elevated prolactin level that can cause irregular ovulation. There's something called late onset congenital adrenal hyperplasia that can present similar to PCOS. So you do need to evaluate all those other things and make sure nothing else is going on. But if those check out off those boxes, somebody doesn't have any issues there and they have two out of three of these criteria, they considered meeting the diagnostic criteria for PMOS or PCOS.
Dara: One of the issues I had with the formerly known as the former name of PCOS is you don't necessarily have to have cysts on your ovaries in order to be diagnosed. So why would it be in the name if it may have been one of the three diagnostic criteria, but not necessarily the one that you have to have in order to be diagnosed? So just having the name polyendocrine and metabolic, I think that is definitely more well-rounded in terms of its manifestation. You know, and this is where I work with patients in terms of this population group tend to have higher risk for diabetes, higher hemoglobin A1C levels or you know, blood sugar issues over the long run. So I think this name really does cover it more. You know, it's it's it's more of an umbrella term now as it was, you know, previously.
Dr. Thornton: I agree. And I think even for medical providers, especially maybe people who aren't, you know, OBGYNs or, you know, kind of more in this field, I would have patients come to me all the time. Well, I, you know, I had pain and I went to the ER and I had a cyst that ruptured, and so I they told me I may have you know PCOS. And simple cysts come and rupture and they they're incredibly painful, and that can happen, and that's an isolated event, but that does not mean somebody actually has like PCOS or PMOS or that metabolic, you know, or some people have cysts like things like dermoid cysts or endometriomas with endometriosis, those cysts are not related to PMOS, and so it made everyone very confused. While most women with PMOS don't have like what we traditionally as GYNs consider cysts on the ovaries, where we are really just looking at these follicles, which are just you know eggs, so it did create a lot of confusion, and I think there it was a lot of ignoring the metabolical aspects because it made it just seem like okay, it's a cyst in the ovary issue, and it's really much more than that. And even though you know the diagnostic criteria doesn't include like insulin resistance or pre-diabetes, these are things that are really commonly associated with the disorder and they go hand in hand with it a lot of the times.
Dara: Do you think now with this new definition, we'll see patients being diagnosed perhaps earlier?
Dr. Thornton: I think it definitely will help because I think a lot of patients will be like, well, I had an ultrasound before and I didn't have any cysts on my ovaries. And so they may not think of their other symptoms or regular cycles as like, oh, I may have this, maybe I should go to the doctor and ask about it when they actually have the symptoms, and and and that it is what is going on. So I think it'll be a little bit easier for patients to recognize, oh, I have a lot of these symptoms of this, you know, PMOS that I'm hearing about, maybe I should be evaluated. While when it was a called like a more ovarian cyst thing, people are like, well, I don't have that, so I must not have PMOS.
Rena: Well, I think a lot of people get confused because there's this stereotype of if you have PMOS that the overweight, the cystic acne, the the body hair. And so to also talk about lean PMOS and that you don't always present with those physical traits because I think that there's a disconnect between that.
Dr. Thornton: And again, that's why for the diagnostic criteria, you really only have to have two out of the three, like body weight, you know, is not even in the criteria. And there is a large subset of lean patients with PMOS, and they often, and interestingly, I do see a lot of them have insulin resistance or pre-diabetes, even though they may be leaner because those metabolic changes are often still there. But yes, you not everybody has every single symptom, and it's a spectrum. And some people think you you have to be overweight, you have to have a lot of you know hair growth to check all the boxes, which you don't necessarily have to.
Rena: And what about, okay, if if you have this, what does that mean in terms of fertility?
Dr. Thornton: The main issue of why we see patients with PMOS struggle more to get pregnant is they often do not ovulate regularly. And, you know, I always tell patients, like, we we're only fertile a couple days a month around the time we ovulate. That egg has 12 to 24 hours to fertilize. So if you're not ovulating every month, or at let's say at best you have clockwork ovulation, that's only 12 opportunities a year to be able to get pregnant. So if it's not happening every month and it's getting extended, it's A, less opportunities for an egg to be able to fertilize and for pregnancy to happen. And B, it's very hard to know when somebody should be timing intercourse because if they can't predict the intervals, getting that timing to line up becomes very challenging. And a lot of women with PMOS often get false positives on like ovulation predictor kits. So if they're trying to check their urine, track their ovulation at home, it's really common that they see positive signs, maybe multiple days in a row, because our LH hormone is a little bit more elevated at baseline in women with PMOS, and that's kind of the hormone that's evaluated in these ovulation predictor kits. And so it's really hard for things to line up. And so a lot of women with PMOS, it doesn't mean they can't get pregnant naturally. And some people can help regulate their cycles with lifestyle changes, exercise, diet, but it again, the underlying metabolic disorder is always there. So unfortunately, that person, you know, may be doing all the right things and they're always working against something. And so if their cycles are very irregular, we do have fertility medications that can help people ovulate on a more regular basis so that they can time intercourse and line things up, you know, to make getting pregnant easier.
Dara: I would think also for you know, if one of the criteria that someone with PMOS has is the higher androgen levels, that in and of itself may make it harder to get pregnant. Because as much as women, a lot of women don't know that you do need testosterone, and we do we do make testosterone, the levels relative to the estrogen and progesterone may not be in the right balance to help. Is that correct?
Dr. Thornton: We often see because PMOS patients do often have more elevated LH levels, elevated LH levels can drive or increase um androgen production. So there is some link there, and then we think that that can worsen insulin resistance. So it is all like sort of a circle where it can just perpetuate and make things worse. We need like our pituitary and our brain makes hormones like FSH and LH, which is what grows an egg each month, and then the LH gets really elevated. That we call our LH surge is what triggers ovulation. And so a lot of women with PMOS, they have a lot, it's not diagnostic, but we often see the LH level is higher than the FSH, and it's sort of like the FSH normally grows the egg, and then the LH releases it. And it's almost like why we get a lot of these false positives. It's almost like the brain is saying, like, ovulate, release the egg, but it didn't grow yet. And so it is sort of a just dysfunction of all of our hormones. And then that LH then drives up these androgen levels, and so it just sort of perpetuates.
Rena: Well, I think the again, the sort of the good news, if you will, for this is it's very treatable and manageable. And in terms of fertility, I think that it's a quote unquote good diagnosis to get that, okay, this is what you're presenting with. Okay, this is how we can treat. And then in terms of managing it as an individual, there's a lot of, as you mentioned, lifestyle things that you can do, diet, exercise, et cetera. And that's the best way to manage it.
Dr. Thornton: And, you know, it's not uncommon, you know, people with PMOS, they have like, you know, the insulin resistant, pre-diabetes. Sometimes, you know, we have medications, things like metformin, um, it's a pill medicine that can help control nowadays. We have the GLP1 inhibitors that are very helpful for this patient population. It's not recommended to be trying to get pregnant while on a GLP1, but for patients PMOS who are not trying to get pregnant, those all can be options as well.
Dara: Definitely. There's there's a lot we can do to help support this population group. And so it's good for people to know that yes, we may be having a new definition and a new name that hasn't really necessarily changed things in the grand scheme of things. I, you know, I that my biggest concern was like, are they gonna fully change kind of how we support our patients? And not necessarily, we still have, you know, we we have the support here, it's just the name. I'm interesting to see like how things evolve and change. That's what I love about you know, this field is we're constantly evolving and changing. We're reflecting, seeing what's working for for people, what's working for the medical community, and what is kind of outdated.
Rena: Absolutely. And medicine moves so fast. So is there anything else that we should share with our patients in terms of new guidelines or information around this?
Dr. Thornton: I mean, I think the like medical aspect of like the treatment, the guidelines is really still staying the same. It's really just to reduce confusion and help increase access to care and increase speed to diagnosis because it is unfortunately a very common disorder. But I think the medical management is is really you know staying the same. And we do have good treatments for PMOS, so that's reassuring.
Dara: Well, we're so happy that you've come back to help educate our listeners. We always appreciate you coming on. And I'm sure you know by now how we end our sessions are with words of gratitude. So, what are you grateful for today?
Dr. Thornton: I am grateful, I think just for right now having a little bit of nice warmer weather and more relaxing summer days after our cold winter. I feel like in New York, I feel like that's what I'm grateful for right now.
Rena: I love that.
Dara: I'm gonna take it back on you because it's funny. I was thinking the same thing. I'm like, I'm much calmer. I'm not sure if it's the weather or the season or just being more aware of taking some more time for myself. You know, I think in New York we have a tendency to fill our days up and be very busy. So, I'm appreciating some of the slower moments over the summer. What about you, Rena?
Rena: I will say that I am grateful for stillness and the ability to be still and take that time to breathe because I think it's very important.
Dara: Love that.
Rena: Well, thank you so much for coming on and sharing this with our listeners.
Dara: Can't wait to have you back.
Dr. Thornton: Thank you. Thanks for having me.
Dara: Thank you so much for listening today. And always remember, practice gratitude, give a little love to someone else and yourself, and remember you are not alone. Find us on Instagram @fertility_forward and if you're looking for more support, visit us at www.rmany.com and tune in next week for more Fertility Forward.