PCOS vs Hypothalamic Amenorrhea: Key Differences Explained (Episode 425)

Full Transcript: Episode 425

Lisa Hendrickson-Jack:

Welcome to the Fertility Friday podcast. Your source for information about the fertility awareness method and all things fertility. I’m your host Lisa Hendrickson-Jack. I’m the author of the fifth vital sign and the fertility awareness mastery charting journal. I’m a certified fertility awareness educator and holistic reproductive health practitioner with nearly 20 years of experience teaching women to connect to their fifth vital sign through menstrual cycle charting, balancing hormonal health and optimizing the menstrual cycle without hormones. I’m outspoken about hormonal birth control and its impact on fertility and overall health because you have the right to know how your body works and how artificial hormones disrupt that natural process. I teach women’s health professionals how to utilize the menstrual cycle as a vital sign in their practices and I host live coaching programs to help you achieve optimal fertility and health because it’s important to have healthy menstrual cycles regardless of whether or not you want to have babies. I’m also a wife and mother of two beautiful boys. I know, I’m a busy girl, but I managed to fit it all in. This podcast is designed to empower you to take full control of your cycles, your fertility, and your overall health. And I’m so excited that you’re here with me today.

Today I’m going to jump right into the conversation around PCOS and HA. As a fertility awareness educator, one of the things that fascinates me is the tendency for people to kind of assume that PCOS and HA — so Polycystic Ovary Syndrome and Hypothalamic Amenorrhea — we’ll get into them in a little bit more detail and I will define everything. But one of the things that I find to be really interesting is the tendency for women to be misdiagnosed and for these two conditions to be confused. And kind of like there’s this idea that they’re very similar and it’s hard to distinguish between the two. So what I hope that you’ll gain by the end of today’s episode is a good understanding that these two issues are not the same. They’re very different and quite easy to identify actually which category a person would fall into, you know, especially if you are looking at their menstrual cycle charts. So again, as a fertility awareness educator who primarily does support clients with charting and, you know, whenever I’m working with a client, we do have their chart as part of the whole process. With that piece of information, it’s very difficult to confuse the two. So today we’re going to be tackling that in a lot more detail, just because I just find it interesting and I get these kinds of questions a lot and it really does come up. You know, how do I know if it’s HA or PCOS? And again, my goal is that by the end of today’s episode you will gain clarity on that and at least have a better idea of which side of this conversation that you may be falling into if you’ve been having cycle challenges.

So let’s start by defining PCOS and HA. So I’m going to start with PCOS. What is polycystic ovary syndrome? So PCOS is a common metabolic disorder that causes menstrual cycle disruptions, including abnormal patterns of ovulation and irregular cycles. So PCOS is quite common. It affects anywhere from six to fifteen percent of women in developed countries, so that’s quite a bit, with over a hundred million women worldwide, making it just a very a pretty significant aspect. It is one of the most common causes for ovulatory infertility and so it is something that is quite extensive in terms of how many women are affected by it. As we break down PCOS I also think it’s important to understand how it’s diagnosed. Typically PCOS is diagnosed by using the Rotterdam criteria and basically that criteria means that in order for a diagnosis you need to have two of the three main criteria. The first is oligomenorrhea and that essentially just means irregular cycles. So if we were to define that, it means that the cycles are typically over 35 days in length, they tend to vary more than eight days from cycle to cycle, and/or you’re having fewer than nine periods a year. So obviously with that definition, a woman is still cycling. It’s just that her cycles tend to be very long and irregular.

So the second criteria is hyperandrogenism, meaning that you have high androgen levels. And those high androgen levels can manifest itself in acne, whether it’s cystic acne, hirsutism, so hair growth that tends to be very coarse and obviously in places you don’t want. It could be male pattern hair loss, but these are some of the signs of the high androgens that many women with PCOS experience. And then we also have the third criteria, which is polycystic ovaries on ultrasound. So that’s having 12 or more follicles on the ovary and/or an increased ovarian volume. So these are the three main criteria, but in order to get a diagnosis of PCOS, you don’t need all three. Typically it’s two of the three and that will get you a diagnosis. So what that means is that having polycystic ovaries just by itself is not enough to warrant an actual diagnosis of PCOS unless you have the long and irregular cycles and/or the hyperandrogenism. That’s something important to remember when you’re thinking about the primary diagnostic criteria for PCOS because you can have one of those symptoms and not necessarily have PCOS if you don’t meet the criteria, which is again two of the three.

So there’s more to go to with regards to characteristics of PCOS, which we’ll get back to, but now I’m going to jump in and define hypothalamic amenorrhea — HA. So HA, also known as functional hypothalamic amenorrhea, is a condition that’s characterized by the absence of menstruation. So there’s no menstruation, there’s also no ovulation, and that is occurring due to the suppression of the hypothalamic pituitary ovarian axis, thus the term hypothalamic amenorrhea. And so in this scenario, you’re not ovulating. In this scenario, there is an extended period of time with no ovulation, no menstruation, essentially no menstrual cycle. And it is a result of the disruption in this HPO axis. And there are three main reasons, or three main types if you will, of HA, although most women with HA would have a combination of the three. So there is weight loss related, exercise related, and stress related. So essentially, HA is a condition that is induced by a period of under nutrition — so under eating, over exercise, weight loss, and it could be rapid weight loss — as well as stress. So that combination is what triggers the loss of the menstrual cycle.

And I would say in both situations of HA and PCOS they are both good examples of looking at the menstrual cycle as a vital sign because essentially you have these cycle disruptions or the cessation of cycling as a direct result of something that’s happening in your body, showing us the importance of healthy menstruation and also showing us that when our menstrual cycle is regularly falling outside of what we would consider normal criteria, it is a sign that we should be looking deeper. Something is happening in our health that is being reflected in the menstrual cycle.

So that gives a basic definition of both conditions. So now that we have the definitions out of the way, let’s jump into a little bit more detail. So I’m going to go first into PCOS, and I’m going to talk about the characteristics. And then I’m going to talk about how it shows up in the cycle. And then we’ll switch gears and talk about HA. So we’re kind of just going to keep going back and forth like a little bit of a tennis match.

So to jump in a little bit deeper into PCOS, so I did mention the Rotterdam criteria. So again, we’re looking for two of the three. So typically we’re seeing long irregular cycles. We’re seeing the hyperandrogens or signs of androgens that are elevated. And we may also be seeing polycystic ovaries. So again, lots of little follicles on the ovary and/or an increased ovarian volume. So there’s different types of PCOS, there’s different phenotypes, there’s a lot more detail that you can go into if you’re wanting to, but this is kind of like the general overview. And so up to 85 percent of women with PCOS do experience these cycle disruptions where they are having this long irregular cycle. And I would say that’s kind of a classic PCOS presentation on a woman’s chart where it’s not just once in a while. With almost any woman who’s charting her cycle for a year or more, there will inevitably be a time where she has one longer cycle, one shorter cycle. That’s just kind of normal fluctuations. And typically there’s something going on for a woman in that type of situation where she has kind of like a one-off random cycle that’s like over 35 days or something like that. So in PCOS, it’s not a one-off. It’s a consistent pattern where the cycles are really long.

And it’s often very difficult or at least challenging to some degree for women to get it down. So I’ve worked with some clients who are able to kind of relatively quickly get the cycles under control in under 35 days. But I’ve also worked with women who it takes quite a long time for their cycles to normalize. They often have to do quite a bit of work on their end to get the cycles under 35 days. So it’s definitely not a one-off. It’s a consistent pattern of delayed ovulation.

And again, the cysts on the ovaries — I think it’s helpful to realize that many women have cysts on their ovaries. It doesn’t necessarily mean that it’s polycystic ovary syndrome. Unfortunately we do live in a time where if cysts are detected on the ovaries, women will often get a diagnosis for PCOS kind of like right off the bat without necessarily screening for the other criteria. So again, just want to stress that having cysts on the ovaries by itself is not enough to warrant a PCOS diagnosis. We would also be looking at those long irregular cycles and/or if she has signs of hyperandrogenism.

So the androgens are an important part of the diagnostic criteria for many women with PCOS because up to 80 percent of women with PCOS do have elevated androgens. So are seeing that kind of cystic acne, hirsutism, like the unwanted hair growth that’s quite coarse, and obviously doing lab work and seeing those elevated testosterone levels in the labs. So it is really helpful when you’re looking to actually get that diagnosis to really understand what that diagnostic criteria entails. Because although it might seem fairly simple when I go through it, it’s so common for women to be diagnosed with PCOS if their cycles are kind of irregular or if they have some hormonal abnormalities even if they don’t meet the criteria. And I’ve also seen women who do meet the criteria but are not necessarily diagnosed because maybe they don’t look the way that the doctors would expect.

Another characteristic for many women with PCOS is insulin resistance — so having this issue with blood sugar regulation. This is one of the reasons why we can look at PCOS as a metabolic condition. So with PCOS, women are less able to process their carbohydrates. It really elevates blood sugar. When their pancreas secretes insulin, they’re not responding to it. So then the pancreas has to secrete more insulin in order to get the blood sugar under control. And so insulin resistance is a key piece of this puzzle. And anywhere from 50 to 70 percent of women with PCOS are actually insulin resistant. So it’s again, it’s not every single person with PCOS, but it’s certainly a very significant percentage of women with this condition are also showing signs of that.

So in addition to those characteristics, inflammation is a really big part of the PCOS picture. Women with PCOS tend to be struggling with issues related to inflammation as well as metabolic disturbances. So when a person does have PCOS, they are at a lifetime greater risk of developing type 2 diabetes and other metabolic conditions. So it is important to realize again that although we look at it as a disruption of ovarian function, the change in ovulation, the delay in ovulation, and the issues with anovulation or sporadic ovulation, irregular cycles and what have you, are really the body’s way of responding to this metabolic issue. And so for many women, addressing the metabolic issues, getting the blood sugar under control, helps them in their path to normalizing their cycles.

So a couple myths about PCOS, since we’re talking about it, is that if you have PCOS you definitely won’t be able to get pregnant. There definitely are challenges with regards to inflammation and egg quality and different things related to PCOS, but it doesn’t mean that it’s not controllable. Many women are able to stabilize and normalize their menstrual cycles even with this condition with a variety of changes, and pregnancy is certainly possible. Helping to get the cycle under control is an important piece of that but just because a woman has PCOS doesn’t mean she is incapable of conceiving.

So now I want to shift to how does PCOS show up in the cycle. So now that we have a general sense of what the characteristics are, what does it look like when you’re charting? So by now you already get a big piece of it, which is that you would expect to see long irregular cycles. The key is that women with PCOS have cycles. They are cycling. Even if their cycles are 50 days or 60 days or 90 days, they still continue to have cycles. That is the first thing that is very, very helpful in identifying the difference between HA and PCOS. They are still cycling, even if the cycles are really long, even if they’re going a long time between ovulations and periods, cycling is still happening.

And because of the way that PCOS operates in the body, I mentioned that one of the possible signs and symptoms is the enlarged ovarian follicles — so is the polycystic ovaries. So having a number of follicles developing on the ovary and/or having an increased ovarian volume. Now, when you have a lot of little follicles developing on the ovary, but not necessarily making it to ovulation in a timely manner, what happens is that you have all these little follicles. So a follicle in the ovary means that it contains the egg. So this is part of follicular development. But when you have a whole bunch of little follicles developing, they’re kicking out estrogen, but not enough to trigger ovulation.

And so what often happens in the menstrual cycle of women with PCOS is that they will see cervical fluid, they’ll see many, many days of it if they’re tracking, they may see multiple patches of it. And I’ve often heard women with PCOS talk about, “Oh, I ovulated a bunch of times in my cycle,” etc., etc. So you’re not ovulating a bunch of times if you’re seeing multiple patches of cervical mucus. Lots of days of that kind of clear stretchy mucus, even if it’s just a little bit, but you’re kind of seeing it a lot of the time — that’s one of the classic ways that PCOS can present in the cycle, whether it be multiple days of mucus way more than the normal. In a normal cycle, we would expect to see two to seven days of mucus ending in ovulation. Again, it can be the clear stretchy or it can be the lotiony, but with women with PCOS, often they have an extended period of time, whether it’s weeks, a week or two, or many, many days of mucus, or they may see multiple patches. They’ll see mucus and think they’re moving towards ovulation, but then ultimately they’re not ovulating — the temperature isn’t rising — and then a few days later they see mucus again.

Other issues that may arise include heavy periods, heavy bleeding. And one of the downsides of having this really long follicular phase where you have all these little follicles that are kind of there kicking out a little bit of estrogen as they’re developing, but not enough to trigger ovulation, is that you end up with an extended exposure to estrogen. And estrogen is a hormone of proliferation that causes the uterine lining to grow and build. So when you have all these days of estrogen exposure, what ends up happening is that you can end up building more of an endometrial lining, and that can lead to a heavier period.

So these are a few of the things that can show up in the cycle, a few things to watch for. But I’m bringing up these specific points because these are specific pieces of information that make it very easy in many cases to differentiate between PCOS and HA.

So now that we know the common characteristics of PCOS and how it shows up in the cycle, let’s switch over and talk a little bit about the characteristics of HA and how HA shows up in the cycle. So again, going back to that definition of HA, three main categories of HA. We have weight loss related, exercise related, and stress related. The characteristics of HA are typically seen in women who are under eating, whether it’s for a specific reason. So we might have someone whose goal is weight loss and they’re specifically under eating calories counting, so making sure that they’re eating less calories than they’re burning for an extended period of time. You may also have women who are limiting their food to a more severe degree, as is seen in certain disordered eating patterns. Not to say that every woman with HA has an eating disorder, but more so the disordered eating patterns. But ultimately you have a situation where a woman is not eating enough to actually sustain her body baseline and/or her activity level.

So we also see a trend of over-exercise. And I think because our views on exercise as a culture are so varied, often it’s not necessarily recognized. So I feel like our culture really prioritizes exercise and puts it on this huge pedestal for the picture of health, to the point that if we’re not exercising regularly, then we’re maybe lazy, not doing enough, etc. But even to the point that I think you could be exercising three to five times a week and still not really think that that’s a lot of exercise. So it’s so normalized, I think, that it’s quite easy for a person to inadvertently exercise more than maybe what is optimal for their body. But that is directly related also to the food part.

So I think one of the biggest challenges for women who are on that, what I would call the HA spectrum, is that even if the exercise isn’t that outrageous — like even if it’s not necessarily that much exercise — if we’re not compensating in our diet and ensuring that we’re consuming enough overall food to offset what our body needs for the exercise, then we can fall into that HA territory. And over an extended period of time with the caloric deficit and weight loss, whether it’s rapid weight loss or slow weight loss, it can lead to this essentially state of chronic under-nutrition. And that is essentially what ultimately disrupts the conversation that’s supposed to be happening between the hypothalamus, pituitary gland, and ovaries.

Also, stress plays a huge role. So for some women, they will look back to when they first lost their period, when they stopped menstruating and ovulating. And often it is related to a stressful event. So whether it’s a tragedy that happened in the family, a death of a loved one, or just something in general that was really stressful, that can also be associated with a disruption in that HPO axis.

So those are some of the characteristics of HA. Also rapid weight loss — and it doesn’t have to be a lot of weight. For some women, they may lose 10, 15, 20 pounds in a short period of time and have cycle disruptions that may lead to the complete cessation of menstruation and ovulation. And others may lose quite a bit of weight over a period of time and that may lead to it. So it is important to kind of know some of those characteristics. And again, what I’m describing to you is a completely different scenario than the PCOS scenario. So again, it’s really interesting to think that these two conditions are often confused or mixed up because they are quite different in their presentation.

So how does HA show up in the cycle? Again, when you look at it from the perspective of the menstrual cycle, it becomes very easy to differentiate between HA and PCOS. So if you think back to PCOS, one of the main points was that women with PCOS do cycle. Even if there are periods of time where there is a long delay between ovulations or menstruation, there still is ovulation and menstruation. And because there is follicular development — it’s just that the follicular development is not resulting in a timely ovulation, but there still is follicular development. So eggs are still developing. We’re still trying to get to ovulation. We’re not successful in terms of the timeframe, but we’re still trying to get there. Whereas HA, there’s no trying to get there. There’s just nothing happening. With HA, there is no follicular development or very little, if there is any. And there’s not a move toward ovulation.

For women with HA, they typically have lost their period for six or more months, and sometimes it can extend over a period of a year or more, or several years in some cases. And in that situation, there is no moving towards ovulation. There’s no cervical fluid, because there’s not a whole lot of estrogen or progesterone, because there’s no follicular development. So one of the big differences in terms of the menstrual cycle chart is that there would be no chart. You know, unless she’s edging toward recovery and starting to see mucus right before she actually starts menstruating again, we’re not really seeing any mucus at all. So she’s observing dry. There’s nothing going on. There’s nothing there. If there was hormone testing done, there would be very low levels of hormone because there’s no ovarian development. Essentially the ovaries are on pause and we’re not seeing a cycle.

And so that’s a huge piece of this puzzle to identify the difference between the two, because women who are in the midst of HA and have not started moving towards recovery are seeing basically no cycle and no signs of ovulation, no signs of mucus production, you know, no PMS and no period, no ovulation, no period. Hopefully that is quite clear and will help, especially if you’ve been wondering which side of the fence that you fall into.

And so to kind of go into it again a little bit more, you know, if you were to think about what’s a PCOS phenotype — so again there’s a lot of variation there, there are different types of PCOS — but generally speaking, women with PCOS are eating. And it’s not necessarily like the issue isn’t to get them to eat. The issue is to look at the type of balance between the macronutrients. So balancing the carbohydrate, fat, protein, making sure they’re getting enough protein, making sure they’re looking to potentially reduce high-glycemic carbohydrate intake so that their blood sugar can be more balanced. But the issue isn’t that they’re not eating. The issue might be what they’re eating, but not necessarily that they’re not eating. And again, PCOS is related to a metabolic issue. So we look for those signs of insulin resistance, glucose intolerance, we’re looking for inflammation. It’s more of an issue of how the body’s handling the food.

Now if we look at an HA phenotype, now that’s a bit different because this is happening as a result of the chronic under-nutrition, weight loss, over-exercise, and/or stress, or a combination of all three. Women with HA are often looking to lose weight, maintain a certain size. Even if it’s not necessarily at the forefront, it could present more so as a love of exercise and a fear of stopping — so a fear of taking a week off, a fear of, you know, if I stop exercising I’m going to get all the weight back, that kind of thing. So that tendency to not want to take a break and to be exercising non-stop, often it’s been happening for years and years, to have the exercise piece meshed in with your identity. So you identify as a runner, you identify as a crossfitter, you identify as, you know, insert activity, and often quite strict about the food. Those are kind of that phenotype if we were to look at the difference.

And there’s different ways it can present. Again, this is not to say that women with HA are intentionally under eating. It can just happen. Maybe they don’t feel that hungry, you know, and they’re not really attuned to how much their body might need related to their level of activity. So it’s not something that is necessarily being done intentionally, but it is happening either way.

And so the solution for women with HA is often to work towards reducing exercise and increasing the overall caloric intake. And that can be very terrifying because it can, of course, result in changes to body shape and size and a bit of weight gain, often gaining back the weight to the level that they were before they lost their period in the first place. So there’s a different challenge for women on that HA spectrum, if you will, in terms of getting their period back because it’s more related to changing behaviors and often changing the attitude about their body shape and size and image, and as it relates also to their exercise routine and all those kinds of things.

And so it doesn’t mean that a person with HA couldn’t have PCOS, but at the exact time that we’re looking at their cycle, it would be one issue or another. For PCOS, the solutions can be more complex, but it typically does start — it’s not about trying to get these women to eat. It’s more about trying to shift the macro ratio and start to really look at how to eat in a way that best supports your metabolism, balances blood sugar, and just supports overall hormone balance.

So there’s two completely different situations happening here, two completely different types of conditions, they present in different ways, they have different characteristics, they show up differently in the menstrual cycle chart. And so hopefully this has been helpful just to kind of lay it out piece by piece so that you can see that they are very different.

Hopefully, this has helped to lay it out. Of course, this is a brief summary. You can have a read through The Fifth Vital Sign (free chapter!) if you want to look at the first chapter for free. But in chapter six of The Fifth Vital Sign, I do lay out the differences between PCOS and HA quite clearly, so it’s also a helpful resource if you’re wanting more information to read about it.

A couple honorary mentions. So I had touched on earlier that sometimes women are given a diagnosis when they don’t necessarily have PCOS. And so they might get a PCOS diagnosis because maybe they say that their cycles are irregular, but because the doctors aren’t necessarily trained to look at the menstrual cycle chart, they may jump to that conclusion. And then there are situations — I’ve seen clients who have textbook PCOS, they have the high androgens, they’ve got hair they don’t want, they’ve got these long irregular cycles that have persisted for years and years — but because they are slim in appearance, sometimes the medical professionals won’t give them that diagnosis.

And if you remember back to when I provided the diagnostic criteria, it was two of the three of the Rotterdam criteria. It was the irregular cycles, the androgens, and also potentially the cysts on the ovaries. You notice I didn’t say anything about a person’s weight. So a person can have PCOS at any size. Often because it’s a metabolic condition, it may lead to weight gain. And so there certainly are women with PCOS that do have challenges with weight and weight loss and weight gain. But the actual phenotype of it — it’s not about weight. So I’ve also worked with plenty of women who are lean. So there’s actually a separate term for lean PCOS. And so again, this is one of the challenges of getting a correct diagnosis. Because if you don’t present in a way that maybe your practitioner is expecting — potentially maybe they’re not that familiar with lean PCOS — then if you don’t look a certain way, they may be less inclined to give you the diagnosis, even if you meet the definition. So it’s really up to us to educate ourselves to the best of our ability so that we can advocate for the care we need.

And then similarly with HA, again, the diagnostic piece of it would be the absence of menstruation for a period of six months or more. And in that situation, often women may be encouraged to take the pill to kind of bring that regular bleed. It’s worth noting that some women with PCOS don’t even bleed when they’re on contraceptives. So they take their pill pack and then they take a break, and maybe there’s not even a period — it doesn’t happen for everybody with HA, but it can happen to some. And so again, that’s a big difference. If your period just stops and it won’t come back, then that’s when we should be looking into the possibility that it could be HA. And I would suggest that the pill doesn’t solve that problem, because if the problem is chronic under-nutrition or over-exercise, the pill doesn’t give you food and help you with your exercise to offset the caloric deficit. So we would want to be looking at a more holistic approach to bringing it back.

I’ve seen many women bring their periods back who have been struggling with HA for quite a bit of time. And I’ve seen many women with long irregular cycles bring their cycles back into balance. I’ve also worked with a number of women with PCOS who were in the process of bringing back their cycles — not necessarily that their cycles were perfect or every cycle was under 35 days — but were still able to conceive successfully. So the bottom line is that there’s hope. It is really important to get the correct diagnosis to actually know what you’re dealing with, because as you can see, these two conditions are quite different. And so there would have to be a different approach depending on what’s happening.

At the end of the day, there is hope and plenty of women are able to, over time — it’s not a magical thing, it does take some time and effort — but are able to bring back their cycles to normal. And again, this speaks so clearly to just the concept that we should be looking at our menstrual cycle as a vital sign. And when it’s off, then we need to do something different so that we can bring that cycle back into balance. And that kind of goes hand in hand with achieving optimal health and improving fertility so that we can achieve our goals, whatever they are.

And one of the things I always say is that even if you don’t want children right now, you know, if you have not had a period for six months or more and that continues, you’re at a lifetime greater risk of osteoporosis. So even if you don’t want children right now, you probably don’t want osteoporosis. So I do think it’s helpful to look at our cycles as a window into health and keep that in mind. We deserve to be healthy. We deserve to have healthy cycles, regardless of what our current goals are. Of course, if you’re trying to conceive, it is very helpful to have a cycle that does fall into normal parameters because that does help to optimize your chances of conception, makes it a bit easier in order to identify that fertile window. So for example, in the case of PCOS, when you may have weeks of cervical fluid or multiple patches of mucus, this long extended follicular phase — so pre-ovulatory — and many, many days that you would potentially have to consider yourself fertile. So certainly it does become easier to manage your cycles and to utilize fertility awareness when your cycles are within those normal parameters.

I hope that you enjoyed today’s episode. I hope you found it informative. I hope it’s answered some of the questions that you might have about PCOS and HA. I hope it has helped you to gain a little bit more clarity in identifying the difference between the two. And if you personally have been trying to determine what’s happening with your cycle, I hope that it has been helpful to just kind of clear a few things up. If you found this episode to be a good resource, if you found it to be informative and you know somebody who could benefit from it, the link to share is fertilityfriday.com/425. So with that said, I hope you have a wonderful weekend whenever you’re tuning into the show. And of course, as always, until next time, be well and happy charting.