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If you have acne, irregular periods, and trouble with your weight, the cause may not be three separate problems. It may be one condition affecting your whole body. PCOS, long called polycystic ovary syndrome, was recently proposed for renaming to reflect its hormonal and metabolic roots, and Oluyemisi “Yemi” Famuyiwa explains why the old name sent patients to separate specialists who each treated one symptom and missed the whole picture. Famuyiwa is a double board-certified reproductive endocrinologist, infertility specialist, and obstetrician-gynecologist, and the founder and medical director of Montgomery Fertility Center. This episode is based on her article “Polycystic ovary syndrome is more than ovarian,” published on KevinMD. You will hear why the condition affects one in eight women yet is missed most of the time, why the string of pearls on an ultrasound is not what it seems, and what primary care clinicians should watch for. Press play to hear what your scattered symptoms may be pointing to, and why getting the diagnosis right early is what leads to the right treatment.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome back Yemi Famuyiwa. She is an obstetrician-gynecologist and infertility specialist. Today’s KevinMD article is “Polycystic ovary syndrome is more than ovarian.” Yemi, welcome back to the show.

Yemi Famuyiwa: Thank you. Thank you for having me.

Kevin Pho: All right. So for those who didn’t get a chance to read this particular article, why did you decide to write it? And then talk about the article itself.

Yemi Famuyiwa: Absolutely. This article was prompted when the international consensus article came out saying, “We’re going to rename polycystic ovary, and we’re going to call it something else. It’s going to be called polymetabolic endocrine ovarian syndrome.” Obviously, that generated a lot of confusion with patients, but really the article confirms what we in the fertility practice have known all along, right? I think most physicians have been aware of this.

And I decided, you know what? I’m going to amplify this message and hopefully help decrease the confusion and clarify what is actually going on. I did a deeper dive, and I decided it would be a four-part series, because you can’t cover the entire thing in one short article, especially if you’re trying to explain it.

Kevin Pho: So tell us about some of the context behind that name. This was, to me, a sudden announcement, but obviously you’re in that world. So tell us about the controversy that’s been simmering all those years before they made that name change.

Yemi Famuyiwa: Yeah. So basically, the old name created a lot of dichotomy, a lot of fragmentation in care. People will say, “Oh, polycystic, I went, I did an ultrasound, and I have polycystic ovary syndrome.” Or they hear the word polycystic and immediately think of something bad, like, golly, I don’t even have one cyst. I have all these cysts, and they’re so terrible.

So the name lets people think that it’s all ovarian. That’s the first thing. The name let people think that you could make a diagnosis just from looking at the ovaries, which in fact some radiologists would tell the patients: “Oh, you have polycystic ovary syndrome because we see this string of pearls.” Or the name may keep people who need care away from where they appropriately need it, right? Because if they say, “Oh, I have polycystic syndrome, so then I don’t have to worry about diabetes. I don’t have to worry about a heart problem,” it just took a whole entity and broke it down into isolated silos, whereas that whole entity should be speaking to each other.

Kevin Pho: So obviously polycystic ovary syndrome, the former name, there are really no cysts involved, right?

Yemi Famuyiwa: Exactly. Yeah.

Kevin Pho: So tell us a little bit about, you said that there’s different silos that interact, so tell us about that.

Yemi Famuyiwa: So what it is is, OK, if you look at a regular ovary, you have small follicles in those ovaries, and your brain recruits a batch of them. They’re frozen in space. Your brain wakes up a batch of them and carries that whole basket through initial stages, gets to the ovulatory stage, and then ovulates that follicle, and then the cycle starts again.

What happens? So if you think of the ovary being picked up, placed on a conveyor belt, and then when it gets to the stage where the follicle’s big enough, it’s going to be popped, boom, then the conveyor belt moves. Now, imagine somebody jams this conveyor belt, right? So these are follicles minding their own business, marching along. Now, somebody puts a fist on the conveyor belt, or just puts a monkey wrench in it, so then the conveyor belt halts, and those follicles cannot keep growing.

So then guess what? If I were to back up a conveyor belt in a factory, what’s going to happen? I’m going to back up the belt. So what you’re seeing is a backing up of the follicles that would have continued to grow. You back it up. The conveyor belt’s not working regularly. Sometimes the light flips on, and sometimes one will slip through, but for the most part it backs up.

So if I look at it, and those are pre-stimulated follicles, you will see they look like small, tiny holes on ultrasound, and hence the name polycystic. And that’s another part of it. The stroma of the ovary is thickened because now we have androgen excess, and that’s a whole story we can go into later on. So then the follicles are pushed to the periphery, and you see what is called a string of pearls. And people say, “Oh, yeah, you have follicles.” That’s not it. They are backed-up normal follicles on their way doing their business, and something backs them up.

The term cyst does not mean a pathologic, cancerous, tumorous cyst. Cyst, the derivative name, just means fluid-filled. So those are fluid-filled preantral follicles minding their business, but they’re being backed up. That’s where the name came from.

Kevin Pho: Now let’s talk about some practical considerations of this name change. You said before with PCOS, polycystic ovary syndrome, patients were siloed. So tell us how that specialist-by-specialist care obscured patient treatment, and why was that suboptimal?

Yemi Famuyiwa: Yes. So for instance, people will say, “Oh, I’ve had acne all my life,” and they go see a dermatologist. And the dermatologist, they’re just looking at the skin. They’re not going any deeper than the skin. So they’re treating the acne that results as a result of the excess androgens that patients see. Or they’ll start losing hair, male pattern baldness, and they go, “Oh, yeah, I’m seeing my dermatologist and my hair’s falling out and my face is breaking out in acne.” The dermatologist manages that and doesn’t look beyond.

Then they maybe see an internist or maybe a cardiac person who’s worried about now they’re about to have type 2 diabetes. Their insulin is high, glucose control is abnormal. They may even start to have some abnormal liver problems. They have steatotic liver disease, and then that’s being managed by the liver person, right? But it’s still part of the same syndrome. Now, we’ve got the dermatologist. We’ve got the internist. No one’s really cross-talking. We’re treating it differently, right?

And then some of these patients, they have depression. They have anxiety, so they go see a counselor or see a psychiatrist. Now, the psychiatrist is managing the psychosocial part of it. Again, no one is coming back to the root cause, and they might see a gynecologist because once in a while they hemorrhage when they’re supposed to have a period, or they don’t have a period at all, all right? So as long as they’re not trying to get pregnant, they really don’t hit the doorstep of the reproductive endocrinologist like myself, who’s now saying, “Hmm, I see a constellation here. This is part of the same problem.”

So instead, now we’ve got, what, three, four different specialists, everybody doing their little thing. And this disease affects one in eight women, about 170 million people worldwide. In 70 percent of them the diagnosis is missed.

Kevin Pho: So as you know, I’m an internist. So tell me what I should be thinking about when someone comes in with one of those symptoms and signs that you’re describing, whether it’s acne, whether it’s metabolic syndrome, insulin resistance. Tell me under this new paradigm and name change, how should that change my thinking when I see patients like these in a primary care setting?

Yemi Famuyiwa: So in a primary care setting, if you start to see little bits and pieces of these things that I’ve mentioned, your antenna should be high. Could it be that this person has polycystic ovary syndrome? Could it possibly be? Should I be sending them to a reproductive endocrinologist or a regular endocrinologist? Should we be looking at their endocrine profile to confirm the diagnosis? Check their AMH, because AMH now is part of the diagnosis.

Kevin Pho: So what is AMH for those who aren’t familiar with it?

Yemi Famuyiwa: Yeah. For those who don’t know, those backed-up follicles we talked about, they make AMH. AMH is produced by the small follicles in your ovaries. So people are more familiar with AMH as part of your ovarian reserve. And so when somebody has an AMH of 18.

Kevin Pho: So AMH being anti-Mullerian hormone, right?

Yemi Famuyiwa: Anti-Mullerian hormone, absolutely. So yeah, now you have an AMH of 18. They say, “Oh my gosh, I’m super fertile.” Not so quick. That is diagnostic of PCO. And we even base it on age. So an AMH of, say, eight in a 40-year-old woman may still be diagnostic because it’s on a curve of the age.

So if you see a constellation of these things, we should have our antenna up, right? And then if we know that this is part of a constellation of problems, it helps us address the problems. I think it may also help you try to treat the problem that may be the problem. Right? So if there’s a problem with the liver enzymes, if there’s a problem with either the lipid profile of the patient, is there a profile having to do with the liver, with diabetes or not? Having that on your radar screen, I think, helps you aggressively get onto what you need to do to treat the patient for the particular symptom that you see.

Kevin Pho: Now, just to reiterate, PCOS, polycystic ovarian syndrome, has been reclassified, renamed to polyendocrine metabolic ovarian syndrome. That’s correct, right?

Yemi Famuyiwa: Yes, correct.

Kevin Pho: Now, from a patient’s standpoint, when they’re hearing this name change, I suspect that a lot of the advice that you’re going to give them is similar to what you told me. But anything specific that they should be thinking about with this new paradigm?

Yemi Famuyiwa: I think with the new paradigm, if patients are having a constellation of these symptoms, I don’t expect them to diagnose themselves. But if they’re having some of these symptoms, maybe they need to seek the appropriate help and say, “Hey, Dr. Famuyiwa, these are the symptoms that I’m experiencing. Can someone put it together for me?” Because if you make the right diagnosis on time, it helps you choose the best treatment for that particular patient.

Kevin Pho: What are some of the risk factors that predispose patients to this?

Yemi Famuyiwa: So the risk factors are multifactorial. It could be genetic in terms of the abnormal deranged androgen signal. I would say it could be environmental. It could be genetic that is causing it. So it could be someone who may already be predisposed to diabetes, either genetically or otherwise.

One thing we now see, and I’m going to go into this in another part of the series: These women also have elevated androgen levels. And when they happen to get pregnant, they have an elevated androgen milieu. So the fetus is growing in this elevated androgen milieu, and that starts to affect even the fetus’s ovaries before the ovary is born, right? Because there’s cross-placental exchange of the high androgen levels.

Kevin Pho: We’re talking to Yemi Famuyiwa. She is an infertility specialist and reproductive endocrinologist. Today’s KevinMD article is “Polycystic ovary syndrome is more than ovarian.” Yemi, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Yemi Famuyiwa: Take-home message: If your periods are irregular, if you’re having any symptoms like we’ve talked about, come see a doctor who can help you put it all together, because the appropriate diagnosis helps you pick the appropriate treatment.

Kevin Pho: Yemi, as always, thank you so much for sharing your perspective and insight. Thanks again for coming back on the show.

Yemi Famuyiwa: Thank you so much.