58. PCOS 102: Diagnosis and Subtypes

In this episode, Dr. Monica Minjeur dives deep into the complexities of diagnosing polycystic ovarian syndrome (PCOS). September is National PCOS Awareness Month, making it the perfect time to discuss common diagnostic pitfalls, including the over-reliance on ultrasound and the importance of understanding subtypes. Tune in to learn about proper diagnosis, the Rotterdam criteria, and why getting to the root cause of symptoms is essential for improving menstrual health and promoting fertility.

Transcript

Monica: 0:02

Welcome back to Cycle Wisdom, where we empower women to restore natural menstrual cycles to improve health and promote fertility. I'm your host, Dr. Monica Minjeur, and I'm so glad you're listening today. On today's episode, we continue in our series focused on PCOS or polycystic ovarian syndrome. Since September is National PCOS Awareness Month, I am focusing on creating educational content in an area that is so lacking. PCOS is often not appropriately diagnosed nor treated, and in many clinics, the supposed standard of care is prescribing oral contraceptive pills rather than treating the root cause and addressing other lifestyle factors. On today's episode, we are going to talk all about the diagnosis of PCOS, different subtypes of PCOS, and how PCOS is oftentimes diagnosed inappropriately. In the next few weeks, we are going to dive more into discussing appropriate treatment strategies as well as the implications for PCOS on fertility. Now, if you haven't listened to last week's episode yet, make sure to go check that episode out to learn more about the symptoms, risk factors, and overall health concerns that are associated with PCOS to learn more. So, let's get started today with a story about a client of mine who we'll call Tia. Now, Tia came to see me when she was about 23 years old. She was sent my way for a follow up after an emergency room visit where she had been seen and treated for pelvic pain. She was diagnosed with an ovarian cyst on ultrasound as the cause of her pain. She was also told that she had many cysts on her ovaries, and the doctor that saw her told her that since she was overweight and had these cysts that she has a diagnosis of PCOS. He sent her home with a prescription for pain medications and suggested that she come to see me to talk about starting on oral contraceptive pill medications to prevent recurrent cysts. Now unfortunately this is a very common occurrence and I often see women who are told they have PCOS diagnosed based on just a single ultrasound alone without taking anything else into consideration. So rather than just start her on the oral contraceptive pills that the ER doctor had we asked Tia some more questions. Upon more thorough investigation, we found out that she had normal cycles that were happening about every 30 days. Furthermore, she did not have any symptoms of facial hair growth or hair growing in unusual places that would lead me to believe that she had excess androgens. And finally, she had not ever had any pelvic pain in the past, and although she has had other ultrasounds prior to this, she had never been told that she had cysts before. So we did some further investigation, including some lab work, and also repeated the ultrasound the following cycle. When we checked that next ultrasound, the cyst that had previously been seen in the ER had since resolved. She did have other criteria as far as polycystic ovaries, just with a few extra follicles, but her size of her ovaries was completely normal, and she did not end up meeting the other diagnostic criteria to be able to diagnose her definitively with polycystic ovarian syndrome. So rather than starting her on oral contraceptives, We discussed appropriate treatment strategies if she were to have any recurrent pelvic pain, and we also provided education regarding charting instruction as well as describing what was a normal physiologic development of a cyst or a follicle as part of her cycle that should occur naturally when she is ovulating. So why is this so important to know appropriate diagnosis? I get very passionate about this because we know that up to 50 percent of women with PCOS go undiagnosed. So even if they have criteria that are noted in their medical record or things that we see on clinical exam or when we talk with them about their charting, we find that many women still don't get an appropriate diagnosis. On the flip side of things, we often see that women are misdiagnosed with PCOS or told that they have it when they actually don't. There are many overlapping criteria that sometimes lead to that inappropriate diagnosis, and oftentimes other causes for their particular symptoms are not addressed or looked into further. So the criteria that we typically follow, and this is standard across the board in many medical practices, is called the Rotterdam Criteria. Now, for Rotterdam criteria, it requires that you evaluate three different criteria and in order to get a diagnosis of PCOS, you must have at least two of the three following diagnoses. Number one is that you need to have anovulation. And so, oftentimes we're able to pick this up if you are doing your charting because we're going to see that you are not having a fertile mucus pattern. or we may see that the cycle length is very irregular. So if you're having cycles that are two to three months apart or more, that can be a sign for anovulation. Now importantly, there are lots of other reasons why you may not be ovulating. So anovulation alone is not a criteria. The second criteria that we look at for a diagnosis that completes the Rotterdam criteria is hyperandrogenism. So this means if you have elevated androgens like testosterone, DHEA, androstenedione. Now this can be on lab work that's done times to your cycle, or it can be a clinical diagnosis. So, for example, if you are somebody who has a lot of facial hair growth, if you need to shave your chin, or if you notice that you have a significant amount of darker or thickened hairs on your chest, or your upper back, or around your umbilical area, those are signs of hyperandrogenism. So, again, may be lab related, but may just be clinical. And then the third criteria that we look at that takes into consideration the Rotterdam criteria is going to be ultrasound findings. And I'll get into some of the details in a little bit that look at those ultrasound findings. But if you note with these three criteria, ultrasound findings alone is not enough to give you a diagnosis of PCOS. So that's why it is so important to make sure that you are working with somebody who understands the criteria and is looking to get all of the details to determine if PCOS is your actual diagnosis. So the way that we start off when we're diagnosing somebody with PCOS is we do a full examination as well as chart evaluation. Now again, one of the things we're going to be looking for is anovulation. So do you have a time frame where you're not having any actual fertile mucus? Are you not seeing an LH surge or perhaps not seeing a temperature shift if you're checking basal body temperatures? Those can all be signs of anovulation. Another sign that we look for is if you have long cycles. So what this means is that if you have been having periods for at least three years, that your cycles are happening more than 35 days apart consistently. Or, if you look back over the course of one calendar year, that you have had less than eight cycles during that time frame. Now that can be because of anovulation causing those long cycles, and so that's another way that even if you're noticing fertile mucus, you may not be ovulating regularly or consistently if you're seeing those long cycles. Now, if you have not yet started having periods by the time that you are 15 years of age, or if you have had breast development for at least three years and still don't have a period, that can be another sign of PCOS and it can be a reason for your cycles not starting altogether. Other things that we look at on that exam are going to be those signs of hyperandrogenism. So again, we're evaluating to see if you have hair growth in places that is inappropriate or in an increased amount. And then the last piece of historical information that we always want to check is that if you are somebody who is trying to get pregnant and you're dealing with infertility, that is always worth considering that you may have PCOS. So the next step that we want to look at is lab evaluation. And again, as we mentioned with Tia's story earlier, it is so important that we are looking at the lab evaluation not only to diagnose PCOS, but also we need to prove that it's not something else causing symptoms. There are lots of other reasons why you may have anovulatory cycles or cycles that are irregular. And so at a minimum with your labs, you need to have evaluation for testosterone. DHEA, which is dihydroepiandosterone, progesterone, estrogen, and ideally at least a fasting blood sugar and insulin level. Now not all of these are going to be diagnostic criteria, but all of them are going to help us to look at that bigger picture so that if it's PCOS, we know more appropriately how to treat. Other things to consider as things that need to be ruled out. is that you should always have a complete thyroid panel done. And if you don't know what a complete thyroid panel is, go back and check out my episode where we talk all about thyroid. This is not just checking a TSH. That is not going to be enough here. If you're able to have a timed lab draw, if we can find that you're having somewhat regular cycles, that is always best. But even if you're not having regular cycles, you can still get labs drawn to check for other things like prolactin, cortisol, luteinizing hormone, follicle stimulating hormone, anti Mullerian hormone, 17 hydroxyprogesterone, as well as an oral glucose tolerance test along with insulin levels. Now, these that I just mentioned are not necessarily diagnostic for PCOS, but they do help us to rule out any other underlying causes that may be causing these issues that you're having with your symptoms. And they also give us more guidance as far as if you do have a PCOS diagnosis, where do we need to target our treatment in order to try and get to that root cause. So the last section we're going to talk about as far as that third diagnostic criteria is the ultrasound evaluation. Now, this is where we're going to be looking for what we term as polycystic ovarian morphology or PCOM. Now, it is not required for teenagers to have an ultrasound done in order to diagnose PCOS. We can diagnose PCOS for teenagers just based on irregular cycles as well as the hyperandrogen findings. However, if we don't have both of those criteria, but we are suspicious for PCOS, we can just consider teens to be at high risk. treat any risk factors, and then reassess later if needed. Part of the reason for this is that an ultrasound that is done with great quality typically does require a transvaginal ultrasound to be done. And for many teens, this is not a comfortable procedure. So we don't require that teens go through a process of having that ultrasound completed. But again, knowing that there are other ways we can diagnose PCOS, if they have the other two criteria, we're going as far as the anovulation and either lab findings or cursitism or which is facial hair growth. So the two main criteria that we're looking for on ultrasound are that we're going to look at the size of ovaries as well as check for any follicles. Now a couple important pieces to be mindful of. The criteria do not need to be present on both sides. So sometimes we will do an ultrasound and we'll find that one ovary looks completely normal whereas the other one does show positive signs of that polycystic ovarian morphology. The other incredibly important piece to note with an ultrasound is that this should not be done while you are on hormonal contraceptives. Most of the time hormonal contraceptives are going to block ovulation and they can actually create cysts or follicles that don't rupture, which leads to this increased number of follicles. So if you are on some sort of hormonal birth control at the time that you have an ultrasound done, the diagnosis of PCOS may be less accurate if the ultrasound findings are a part of that criteria. So specifically by the numbers, what we're looking at for a volume of the ovaries is anything that is going to be 10 milliliters or 10 cc's or greater in size of the ovaries. Now, your ovaries are typically the size of about an almond, however, if we're looking at an ovary that is greater than 10 milliliters in size, think about the size of a cherry tomato. So, it is approximately double in size and that's where we get that ovarian volume that makes up one of the diagnostic criteria. The other diagnostic criteria that we look at for ultrasound evaluation is the number of follicles that you have that are less than one centimeter in size. Now the guidelines for the exact number of follicles that we're looking for to get that diagnostic criteria of PCOM differs depending on both the sensitivity of the ultrasound machine as well as the group of doctors that you're talking to that are making the recommendations. Now typically anything more than 12 does generally constitute consideration for PCOM. Although, there are newer guidelines that are recommending possibly increasing to 25 or more follicles in order to count towards the diagnosis. Importantly enough, though, you need to pay attention to making sure that those follicles are all less than one centimeter in size to ensure it is not a dominant follicle, making sure that you are not on hormonal contraceptives when you do these, and again, knowing that the criteria may be a little bit different. And so it's really best to be looking at both of the pieces, the size of the ovaries, as well as those multiple follicles. And if both of those pieces are in place, then we say you do have positive criteria for polycystic ovarian morphology. So now we have our three different pieces evaluated. We've looked at your ovulation status. We've looked at your labs or clinical signs of having high testosterone or androgen levels, and we've looked at your ultrasound findings. So now is where we put them all together to determine the Rotterdam criteria. Now, the classic type of PCOS is labeled as phenotype A, and this is going to mean if you meet positive criteria for all three of those features. So high androgens, ovulatory dysfunction, and ultrasound findings. Classic PCOS is considered the most severe form and it is associated with the highest risk of both metabolic and reproductive complications because we are dealing with all three of those criteria. This classic PCOS subtype does make up anywhere from 50 to 70 percent of the diagnoses of PCOS. The second phenotype that we look at is phenotype B, and this is found in about 10 to 15 percent of women. Now this particular phenotype includes the high androgen levels and ovulation dysfunction, but normal ultrasound findings. So this is also considered a classic form of PCOS and shares many of the same risk factors as the phenotype A, although typically to a lesser extent. Phenotype C is called ovulatory PCOS, and this affects 15 30 percent of women with a PCOS diagnosis. Now this is going to include the criteria of hyperandrogenism, as well as ultrasound findings, but these women have regular ovulatory cycles, which is why we call it ovulatory PCOS. There is typically a less risk of metabolic complications compared to the classic form. And then the final phenotype is phenotype D, which is called non hyperandrogenic PCOS, and this impacts 5 to 15 percent of women with PCOS. So these criteria are going to include ovulation dysfunction and ultrasound findings without the hyperandrogenism on lab or clinical findings. This is associated with the lowest risk of metabolic and reproductive complications among the four phenotypes. Now, things that I want to just note as one final piece here that are not part of the diagnosis. Weight is not a part of a PCOS diagnosis. So, unfortunately, many doctors assume that because you're overweight, if you have even one of these criteria, that you are diagnosed with PCOS, and that is not the case. Other things that are not part of diagnosis for PCOS are cysts alone. Now, it can be very normal, depending upon where you're at in your cycle, to see multiple follicles, to see dominant cysts, and even to see very large cysts. The other is that we can see enlarged ovarian volume that is separate from the cysts alone. So that is not going to be a part of diagnostic criteria if that's the only finding you have. Other things would include an LH to FSH ratio or an AMH level. Now, both of these used to be a part of criteria that doctors are trained to look at, but what we know is that they can be inaccurate, and so they are not a part of diagnostic criteria for PCOS. Now, we do still look at these lab findings because they tell us other important things about your ovulation function. However, it's not diagnostic criteria. And then the final thing that I'll just make a quick note of here that is not part of diagnosis for PCOS is insulin resistance or glucose intolerance. Now again, we do often see insulin resistance as a part of PCOS and we always will check for that because it becomes an important part of treatment if you have insulin resistance, but it is not a diagnostic criteria. So imagine if you were working with someone to get an appropriate diagnosis of your PCOS, rather than not getting all the information before an appropriate treatment was recommended. Finding the actual root cause of your symptoms will get you on the right path to improve your menstrual cycle health and promote fertility. Make sure to tune in to next week's episode, where I talk more about appropriate treatment options for PCOS. And here's a spoiler alert. None of the treatment recommendations I give include use of oral contraceptives, birth control, or other suppressive therapy. If you're ready to work with our elite team of healthcare professionals, go to our website, radiantclinic. com, to schedule a free discovery call with me and learn more about our package based pricing for comprehensive care. We are currently able to see people for in person appointments in the Cedar Rapids, Iowa area, or can arrange for a telehealth visit if you live in the states of Iowa, Illinois, or Minnesota. Thank you so much for listening to this episode. Please share this podcast with someone in your life who would benefit from our services. Remember to subscribe to this podcast for more empowering content that I look forward to sharing with you on our next episode of Cycle Wisdom.