PCOS - S9 EP1 - Symptoms: Audio automatically transcribed by Sonix

PCOS - S9 EP1 - Symptoms: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Kristyn Hodgdon:
Hi, I'm Kristyn Hodgdon, an IVF mom, proud women's health advocate, and co-founder of Rescripted. Welcome to From First Period to Last Period, a science-backed health and wellness podcast dedicated to shining a light on all of the women's health topics that have long been considered taboo. From UTIs to Endometriosis, we're amplifying women's needs and voices because we know there's so much more to the female experience than what happens at the doctor's office. With From First Period to Last Period, we're doing the legwork on your whole body so you can be the expert in you. Now, let's dive in.

Kristyn Hodgdon:
Hi everyone, and welcome back to From First Period to Last Period. I'm your host, Kristyn, and I am so excited to have Doctor Shannon Alexa here to discuss all things polycystic ovary syndrome, or PCOS. Hi, Dr. Alexa.

Shannon Alexa:
Hi Kristyn, thank you so much for having me on your show. I'm so excited to be here.

Kristyn Hodgdon:
Absolutely. So for those of you who don't know, Doctor Alexa, Doctor Shannon Alexa is a board-certified OB-GYN and fertility specialist practicing at Main Line Fertility in Pennsylvania. Like I said, today we're going to be talking all about PCOS, a topic that's very close to my heart. I have PCOS. It's led me to a very long journey of trying to conceive my twins and then now my sort of secondary infertility journey, so I have a lot of thoughts. And, but what's so interesting about PCOS is that it affects everyone so differently. So I'm excited to dive into how it can show up in women day to day and some tips for how to manage it. Let's dive right in. What exactly, for those who might not, or who might need a refresher, what is the official medical definition of polycystic ovary syndrome or PCOS?

Shannon Alexa:
Sure. So it's actually interesting. We don't either, there's really no universally accepted definition to the point that we've had, the medical community has had several consensuses, several meetings of the minds, so to speak, where we're trying to understand how best to define PCOS. And what we've settled on is something called the Rotterdam criteria, which generally breaks PCOS down into a disorder characterized by hyperandrogenism or having elevated testosterone levels in the body or other hormones that are similar to testosterone, usually some sort of ovulatory dysfunction, so women have usually elongated time frames between their periods. So instead of getting a period every month, they might get one every three months. Every six months, they might not get one at all. And then usually there's some sort of like polycystic ovarian appearance on ultrasound. But you don't have to have all of these criteria. Generally, we say two out of the three, but it is also important, I think, to remember that PCOS is a diagnosis of exclusion. And so, in the workup of PCOS, we also have to rule out other causes of that can cause the periods to be irregular. And then, if nothing is found, PCOS is one of the things that we end up settling on.

Kristyn Hodgdon:
Yeah, and that's actually an important point to bring up because there's also hypothalamic amenorrhea, which can be like absent or prolonged periods without PCOS. Explain the difference between the two.

Shannon Alexa:
So PCOS is just one of the things that can cause irregular menses. But there are many other conditions that can cause the menstrual cycle to be absent, or abnormally long, or just abnormal in general. There can be congenital conditions like congenital adrenal hypoplasia, other conditions that individuals are born with that can cause things cause a period to be longer. PCOS is just one of those conditions, but they can present similarly. And even though the hyperandrogenism or the elevated testosterone symptoms like obesity, abnormal hair growth on the body, even though those are things we typically associate with PCOS, they're not present in all women. Sometimes it's just the abnormally long menstrual cycles that are really the only sign that people know. And so when a patient comes in with just that as their main concern, you have to do your due diligence and rule out these other types of conditions that present in the same way.

Kristyn Hodgdon:
Exactly. No, that's so true. I'm definitely one of those people that, for as long as I can remember, I just had regular cycles, like very long bouts of time in between my periods, but not really any other outward physical symptoms. And then it wasn't until I started trying to have a baby that I was like, Oh wait, this is a problem.

Shannon Alexa:
Well, and you know, I often find that it is about the time that patients try to have a little one, that they end up seeing that these irregularities are present because it's super common to have irregular menstrual cycles when you first get your period when you're a teenager. It takes a little bit of time for the body to figure that out and for the ovaries to adjust to this reproductive cycling. And oftentimes, that causes teenagers to go on birth control or other regulatory hormones, not just for the birth control sake, but also for this regulatory mechanism which covers the symptoms of PCOS. And so now all of a sudden, you're maybe in your late 20s, early 30s, you're ready to have a family, you stop the birth control, and then that's when all of these symptoms start to manifest. And so it's super common for people to not really know that this is an underlying concern until they do try to have a little one.

Kristyn Hodgdon:
Yeah, absolutely. I know on one end, I like wish I had known sooner, but at the same time, birth control did help me manage my symptoms and regulate my cycle for so many years that it's hard to be hindsight's 2020.

Shannon Alexa:
Oh, yeah. And to be honest, when, say, a younger patient comes in, and PCOS is diagnosed, the goal at that point is usually not for them to try to conceive. And so birth control is one of the mainstay therapies to help regulate or rather, prevent those other manifesting symptoms like the male pattern, hair growth, the acne, those types of things that I think cause a lot of stress and anxiety, and those types of symptoms in young women. And the acne is one...

Kristyn Hodgdon:
Of my goodness. That was my big telltale sign, and I, yeah, birth control was definitely a blessing in that department. And I think birth control is getting a bad rap as of late. There's just been a lot of misinformation out there about it. And in my case, like I said, it really did help clear up my acne and keep certain symptoms at bay. I guess I, when I say I wish I had known sooner, I wish that I hadn't been actively or wanting to have a baby before I knew that to get off the pill and to see where my body was at and all of that stuff.

Shannon Alexa:
Yeah, no. And I think a lot of patients feel that same way. They get this diagnosis, and then all of a sudden something that they thought, I feel like you spend your entire early life preventing pregnancy like this, that would be the worst thing to possibly happen. And then all of a sudden, now you're like, Okay, let's try to do this, let's have a baby, and then there's a barrier to that. And so there's usually this, Oh, I wish I had known sooner so that I could do all of had done all of these steps before, but it's so hard to know when you're being on birth control. When you're young, a young adult, a teenager is usually the best thing for that person at that time, but you're absolutely correct, for women who have a known diagnosis of PCOS already, it's usually, it's nicer to go into wanting to have a baby with the knowledge of that already being on the table. I think that it's like a double-edged sword. It's so hard to know when you're young and going through that process, but you're not alone. A lot of women, unfortunately, don't realize that this is something they need to worry about until they're actively trying and are noticing abnormalities.

Kristyn Hodgdon:
Yeah, and I always say I actually do feel like it's sped up my journey a little bit because once I came off the pill, I didn't get a period for three-plus months, and at that point, my OB-GYN immediately sent me to a fertility specialist, which felt like whiplash at the moment, but I quickly learned if you don't ovulate, you can't get pregnant. And so it would have been like pointless for me to be trying at home at that point. So I definitely gained some ground there. I just think no one likes surprises about their own body.

Shannon Alexa:
Oh my gosh, it's so true.

Kristyn Hodgdon:
At the worst possible times. But what are some of the sort of red flags that people should look out for if they are thinking that they might have PCOS and aren't sure and want to, like, what questions can they ask their OB-GYN?

Shannon Alexa:
I think it comes down to what symptoms they're experiencing at the time they go to see their OB. If patients are having, if they're feeling completely fine, they're not having any of the typical symptoms we associate with PCOS, they're menstruating regularly, even if there is some underlying potential, if it's, if you're having nice regular cycling, it usually isn't, it's usually something that an OB-GYN can manage without you having to be pushed to fertility care. But I think if there's any curiosity, some of the big red flags where I would say, Okay, if you're experiencing this, you might want to ask your OB about PCOS is almost exactly what you were going through, right? You stop the pill. You notice these long duration of time between your periods. So you should be getting a period about every 28 or so days, and if you're noticing elongation of that in a consistent way, so sometimes there can be cycle-to-cycle variability, but if you're noticing now you're going a month-and-a-half, two months, three months, anything longer than that for durations of time, you should definitely be evaluated by your OB. Because a period, if you're not on any medication, if you're not on birth control of any kind, a period will happen after ovulation occurs, and if there's no ovulation, no period will happen. So if you're noticing those long spans of time between your period, you should definitely ask your OB-GYN for an evaluation. Also, if you're noticing abnormal patterns of hair growth on the body that have recently gotten worse, like over a period of time, you've noticed that's getting much worse. So we're talking about abnormal growth on the face, your upper lip, your chin, your neck, your chest. If you're noticing thickening of the hair on your body or, honestly, male pattern baldness type symptoms, so alopecia or hair loss on the top of your head, thinning of your hair, worsening acne all of a sudden is getting better, not responding to typical treatments; those are all reasons I would say, Hey, maybe we should see if there's a reproductive reason that these are happening, because a lot of those type of external symptoms that we see, you, it's best to get on therapy before they get worse. Once they start, it's hard to reverse some of that hair growth, but we can prevent it from getting worse in the future. I would say those are the types of symptoms, if you're experiencing them, I would definitely ask your OB-GYN, especially if you're getting to a phase of your life where you're thinking about having kids.

Kristyn Hodgdon:
Yeah, story of my life. Are you Italian, or do you have PCOS?

Shannon Alexa:
Honestly, that's something patients consider. There are definitely cultural aspects to the amount of hair that we have on our body, but your OB will be able to take that into consideration to when they evaluate you. That's why I think it's important to say, has it gotten worse, or is this something you've just been experiencing your whole life? If you're not noticing a massive change, then it could just be just how you are. But I think it's important that if you're seeing all of a sudden, you came off the birth control, all of a sudden you're like, Oh, my periods are very long, and I'm starting to notice, like abnormal growth of hair on my chest, on my face, you maybe, I should get that evaluated. It's those types without like a cute change that I think people should see their OB-GYN about.

Kristyn Hodgdon:
Yeah. And I just want to underscore what you said about if you're not getting your period, that means you're not ovulating, because believe it or not, and we say this at Rescripted all the time that sex ed in the US is broken. But I didn't actually even realize that until I was in my late 20s and already trying to have a baby. It's amazing to see that so many younger women are getting themselves educated earlier on. But, and that's what we're really trying to do here at Rescripted, but I genuinely thought I could get pregnant at any time, and that is definitely not the case alone.

Shannon Alexa:
Even all doctors were kids too. So even before I went to medical school and did all of that, like, I didn't know anything about the reproductive system because it's in such debate in this country, I think in most countries, honestly, about what we should teach our kids about sex ed, what we should teach them about their menstrual cycle, about their body. And so I am also really happy to see this kind of increasing trend about knowledge and information, about learning more about yourself. But you're definitely not alone. Most individuals, I feel like as women you live by, are you getting your period? Is my cycle normal because I'm bleeding? And then when we ask about the period, it's the automatic response is, Well, I'm, it's this heavy, and I bled for this many days. But it's less about what as like a physical manifestation of your bleeding and more about the time frame between that and trying to understand a little bit about what is causing the bleed, right? And how the cycle itself is regulated? Longer cycles are because the body is having a hard time recruiting an egg to ovulate. Once ovulation happens, that time frame is usually fixed, and patients will end up getting their period 14 days after they ovulate. So if you haven't gotten a period for three months, it means you ovulated two weeks before that period came on, and you had spent the two-and-a-half months before that just trying to get the ovary to wake up. And so it's these are not well-known or common known things in the public. And that's why I think if you are seeing those types of irregularities, definitely reaching out to your provider is a good idea. I'm also in line with you. I'm glad to see the increased education.

Kristyn Hodgdon:
So I wanted to ask you too, about insulin resistance, because I, as much as I have learned over the past couple of years working in fertility and women's health, I still wasn't completely sure if I was insulin resistant. Because I don't know, there's a lot of nutritionists out there that are like, Okay, if you want to fix your PCOS, you have to fix your insulin resistance, but not everyone has, not everyone with PCOS has insulin resistance. And then, even though I don't have insulin resistance, I still don't get regular periods. So I just want to like, clear that up, that it's not that it was that simple.

Shannon Alexa:
PCOS, after you exclude all of the other reasons why someone might not be getting their period regularly, and you're left with someone who fits the PCOS diagnostic criteria, it's still a large umbrella term that encompasses many different types of symptoms that a patient might experience, and many different ways that they can present with menstrual irregularities, one of those being insulin resistance. So you can think about that as a symptom that starts to manifest in more severe cases of PCOS. So you can have PCOS and the underlying hormonal abnormalities associated with that, but it might not be to the extent that it's starting to manifest as insulin resistance in the body. And what's happening on a very simplistic level is the, so the ovary makes estrogen in the beginning phase of its cycle, and after ovulation converts that, starts to convert what it's making into progesterone. So those are the two hormones that are leading the charge for your menstrual cycle. But estrogen and testosterone are very close together in how those hormones are made. And so we tend to see that there's a higher level of the testosterone or androgen-type hormones in women with PCOS compared to estrogen, so there's just a slightly higher ratio there. That kind of throws off a different enzyme, which also is related to your insulin resistance. So the higher levels of testosterone or androgens in the body, over time, will end up causing insulin resistance. So you might not experience it now, but if the PCOS continues to get worse, or if a person ends up manifesting worsening symptoms of PCOS, insulin resistance can develop. So that's why we might see it in some but not others. And then the same reason that insulin resistance is happening also helps contribute to obesity. And it's all still linked with the elevated androgens, which cause the abnormal hair growth and the acne and those types of things that we see. So insulin resistance is also a little bit trickier to diagnose. And in general, as a society, there's a little debate about whether we should really be testing women for insulin resistance and how best to go about treating that. I personally do test my patients for insulin resistance, but I know some of my colleagues don't directly test for it if they're seeing other manifestations. But in general, I feel like because it's a part of that, it can affect women. And if we're starting to see insulin resistance, they do tend to have higher levels of menstrual irregularities, and so I do tend to test for it. It also helps me understand whether treatment with medications that help you use your insulin better is warranted, because some women don't tolerate them very well. And so I think it can be helpful, at least for me as a clinician, to understand whether that type of therapy is necessary.

Kristyn Hodgdon:
What are the tests that someone should ask for if they want to advocate for getting tested for insulin resistance?

Shannon Alexa:
So I tend to do a general metabolic panel which also looks at a fasting glucose level. I do a hemoglobin A-1c, which looks at your sugar levels over a three-month period. I also add in a fasting insulin level, which is the test most clinicians don't utilize. And then we also look at, something you could consider doing is a lipid panel or a cholesterol panel on patients, because we also tend to see high levels of cholesterol and women with insulin resistance. So this allows individuals to look at how a patient is utilizing their insulin to help metabolize the glucose or the sugar that they're eating. And if we're starting to see that there's higher levels of glucose in the body circulating when the patient's been fasting, or if the hemoglobin A-1c shows that their sugar levels have been consistently elevated, maybe putting them at risk of prediabetes or diabetes, then you can infer that there's an insulin resistance because those things wouldn't be happening. I use a fasting insulin level also to help me understand whether that's actually occurring, especially if I'm, if that ends up leading to, say, recommending medication use like metformin or ovasitol, which is a supplement that kind of helps you use your insulin levels a little bit better.

Kristyn Hodgdon:
I've been, that is the one supplement I've been taking religiously for the past like six years. I do love my ovasitol.

Shannon Alexa:
Ovasitol's great. Ovasitol or inositol; those are the two different brands for the same supplement. It's great. It does help you utilize your insulin in a little bit of a better way, but it doesn't tend to have, you can still have some GI side effects on it, but it doesn't tend to have the more aggressive side effect profile like metformin does.

Kristyn Hodgdon:
Absolutely. So are there in addition to inositol, are there any other lifestyle, or nutrition, or supplement recommendations that you typically give to your patients that have PCOS?

Shannon Alexa:
Yeah, I think it does depend a little bit on how the patient presents. So if we're already dealing with high levels of insulin resistance and there's underlying obesity or underlying high levels of cholesterol, weight loss is one of the biggest things that can help tip the scales, because having elevated levels of androgens is one of the key things that throws off the menstrual cycle and PCOS. And in women who are obese, the adipose tissue or the cells that kind of contain the fat also make low levels of peripheral estrogen, which then gets converted to testosterone so that it makes the whole process worse. And so any type of weight loss helps reduce that conversion of testosterone. We've noticed, especially in women who are obese, and about 80% of women who have PCOS will be, any type of weight loss, helps reduce those androgen levels, and helps, can sometimes help correct. So if a patient is struggling with obesity and in addition, has PCOS, diet and lifestyle modifications are also recommended. I personally use a nutritionist who specializes in women with PCOS and fertility issues, which I think can be super helpful, but generally focusing on a more well-rounded diet and one that tends to reduce sugar intake, simple carbohydrate intake, I think speaking to a nutritionist about how to prevent things like diabetes and things can be helpful for those women, and also increasing cardiovascular exercise helps burn fat, and also increase the good cholesterol that you need in your body. So usually, diet and lifestyle modifications are the key. The inositol is a great supplement to start, or if we end up needing to move towards metformin, that can also be a good medicine to help increase your ability to use the insulin your body is making.

Kristyn Hodgdon:
Yeah. So I don't think we actually covered this, but so bloodwork and ultrasound are basically the two things that you need in order to get officially diagnosed with PCOS, as well as like the anecdotal information about the ... we're experiencing?

Shannon Alexa:
Yeah. So how we would work a patient up if we were concerned about PCOS: it all starts with the general history of the patient. So they're giving us information about certain symptoms they're having that might tee us off to think, Okay, PCOS could be a running here. So definitely, the clinical symptoms, the abnormal hair growth, acne, obesity, abnormal cycling is really one of the the hallmarks because having an abnormal menstrual period is one of the diagnostic criteria. You have to have that kind of included. Or I shouldn't say, you have to have at least two of these three things. So abnormal period is part of the history. You can present and not have any outward appearancing or signs of having elevated androgen levels, but we might find it in your lab work. So you always start with the history. Then you, I would recommend a lab work to help us understand that whether elevated androgen levels are a concern. So this tests for things like your underlying testosterone level, a hormone called DHEAS can be helpful with another pre-androgen. We want to look at other conditions that can mimic PCOS to try and rule things out, making sure that the thyroid hormone is normal, making sure that, there's a hormone called prolactin, which is made in the same place as the brain, is the hormone to stimulate the ovary, this one is elevated. It can throw the cycle off. So we want to make sure that's normal as well. And then there's testing we can do for congenital adrenal hyperplasia which can also mimic that. So I tend to include that in my panel. Some general OB-GYNs will also look at your hormone levels at the beginning of a woman's cycle. So the LAFSH ratio, some will utilize that as well, although it's not, depends on who you're going to see. And then a transvaginal ultrasound or an abdominal ultrasound to look at how the ovaries are actually looking because that polycystic ovarian appearance is one of the things that can help clue you into that. And I'm sure you're familiar because of you, I'm sure you've gotten an ultrasound in the past, but a polycystic ovary just looks like little teeny tiny cysts, little teeny tiny black dots all over the ovary. And they're just there, it almost looks like a string of pearls or a little cluster of grapes on the ovary. And it basically.

Kristyn Hodgdon:
And are those follicles? I've always been confused about that.

Shannon Alexa:
Yeah, I think it's a misnomer to call them cysts. A cyst, I feel like has a negative connotation. Like it makes it sound like it's something abnormal that the ovary shouldn't do, but that's, the whole ovary's function is to make these little follicles to ovulate eggs. But yeah, basically, we're, the ovary has all of the eggs that it's ever going to have when you're growing in utero, when you're developing. And it just keeps these cells within it so that when you hit puberty, the ovary gets stimulated by the brain and it recruits a bunch of them, and in PCOS, women have a hard time with that recruitment. And so the follicles or the what we call pre-antral follicles or antral follicles, they end up getting to this stage right before they're ready to be recruited, but it just never happens. And so you end up being able to see them all on the surface of the ovary on the ultrasound, and they look like just teeny little circles all over the ovary. And we call them cysts, but they're really not cysts. They're supposed to be there, we just have to get the ovary to let them go, but.

Kristyn Hodgdon:
Yeah. But I think that's a really important distinction to make because I feel like cysts can have such a negative connotation, like you said. And a lot of women with PCOS think, I can never have children. And a lot of times, if you can, whether it's through ovulation induction medication or IVF, like those follicles are there.

Shannon Alexa:
They're there, yeah. Normally it's not an ovarian reserve issue in PCOS, which I think is another thing women worry about just as they age is, but usually, it's not about not having the eggs; it's about getting the ovary to let them go. Like we have to get, there's just a resistance to the ovary not being able to recruit the egg and actually allow the egg to continue to grow to get to the ovulation stage. And that has a lot to do with just the abnormal hormone levels that kind of that are associated with PCOS. And we just oftentimes ovulation induction for women who are trying to conceive can help override that and finally allow the ovary to release those eggs. But yes, I have a lot of women who come, and they're like, I have a cyst on my ovary. And most of the time I think it's important to remember that the ovary is supposed to make these follicles. They're physiologic cysts. They're supposed to be there, but in PCOS, we just see a ton of antral follicles all over the ovary and label them as cysts, even though they're supposed to be there.

Kristyn Hodgdon:
Yeah, but when you do, if and when you do IVF, they're a beautiful sight.

Shannon Alexa:
It's a good sign if you're in an IVF stimulation, and we see all those little follicles growing.

Kristyn Hodgdon:
Yes. What else? I think we covered a lot of it. In the next episode, we'll go deeper into trying to conceive of PCOS and what to do if you haven't had a period and you're hoping to have a baby and all of that good stuff. But yeah, I think that's it for now. Oh, I always like to ask at the end of each episode: What would you rescript about the way people think about PCOS, either just as a disorder or as it relates to fertility?

Shannon Alexa:
I feel like when people hear the term PCOS, they think that it's something that's not, that nothing can be done about it. And I think it's just, it's a difficult diagnosis I think, when you first hear about it, because I think you feel like fertility and your ability to ovulate and have a period is something that the body should just be able to naturally do, and it's something you don't really have control over either. And so I think there can be a lot of why, it almost feels like something internally is so flawed. But I think it's important to realize that women with PCOS, there is treatment options available, and if you are at all concerned, get to your OB, understand your diagnosis, and then don't be hesitant about seeking additional help. So at the very beginning, you mentioned that when you ended up getting referred to a fertility specialist, you were like, Oh, that happened so quickly, and, I'm not sure if I was ready for that transition. But if patients are concerned they have PCOS, get the diagnosis, then getting help right away with trying to conceive, getting that instruction at the beginning of your journey as opposed to trying on your own and then end up needing help later, I think is important to, it'll really make a big difference in the whole stress of the journey. But I digress there a little bit. I guess I would say mostly that it's not a hopeless situation. There are many things that you can do to help correct your PCOS, and it's definitely not, it's not a diagnosis that is going to prevent you from having a little one. It is definitely possible. And just see your OB-GYN, get ruled out for these things, and get help with your fertility journey as opposed to waiting.

Kristyn Hodgdon:
Awesome. Great advice. Thank you, Doctor Alexa, this was lovely, and it will help a lot of people.

Kristyn Hodgdon:
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