New Research: Women With PCOS Don’t Actually Have More “Cysts” (Episode 627)

Full Transcript: Episode 627

Lisa Hendrickson-Jack:

As promised, in today’s episode, I am jumping into a second part of my impromptu PCOS — or should I say PCOM — series. In last week’s episode, I talked about the name change. After many years of discussion, they have finally changed the name to really focus on the metabolic aspects.

I had mentioned in last week’s episode another new paper that came out that was looking specifically at the ovarian cyst part of the conversation. In today’s episode, I’m going through that research paper, because I think the findings are worth talking about. I think it’s worth having its very own episode. And it is something that I’ve actually thought of just based on learning about the menstrual cycle, how it works, how the processes work. We’re going to be talking more about ovarian cysts in today’s episode and how they relate — or potentially don’t relate — to PCOS.

The paper that I will be going through today is actually a research letter called “Ovarian Cysts in Polycystic Ovary Syndrome.”

This paper reviews a cross-sectional analysis of just under 2,000 women between the ages of 33 and 37 years old. That cohort was then reduced to eliminate hormonal contraceptive users. And this group of women was then further broken down to those with and without PCOS based on the 2023 Rotterdam International Guideline that we talked about last week.

The researchers basically had one main question that they were looking into. The question they wanted to figure out is: for these women with PCOS, do they actually have more pathological ovarian cysts than women who don’t have PCOS? They were actually evaluating the ovarian cyst hypothesis — because with a name like polycystic ovary syndrome, the assumption is that there’s an issue happening with these cysts.

These researchers are trying to determine if women with PCOS actually have more abnormal or pathological ovarian cysts. It’s a really interesting research question — and I think it’s leading essentially to a really helpful clarification on what’s really going on in the ovaries. I would argue that this is why having a basic fundamental understanding of the menstrual cycle, how it works, how the hormone cycle works, and how that relates to ovulation would clarify so many things for both patients and clinicians alike.

To take a quote from the paper: “Women with PCOS and their clinicians often mistakenly believe that PCOS is associated with pathological ovarian cysts. In a global survey with 7,000 respondents, 85% of patients and 62% of clinicians associated PCOS with ovarian cysts.”

So essentially, if this is the case, then we should find that women with PCOS have a higher rate of abnormal and problematic cysts. The researchers divided women with and without PCOS and then gave them a series of ultrasounds to determine if women with PCOS have a different profile or persistence of ovarian cysts.

What I feel was kind of the unexpected finding of this study is that there was no increase in cysts for women with PCOS. When they did all of these ultrasounds on the study population, they did not actually find a statistically significant difference between the number of cysts that women with or without PCOS had.

To be very specific: they were looking at pathological cysts — simple cysts, paraovarian cysts, hemorrhagic cysts, endometriomas, and dermoid cysts. When they compared the presence of these pathological cysts in women with and without PCOS, there was essentially no difference. What they found was that the women with PCOS — their rate of cysts was not statistically significantly different.

What they did confirm, which is not surprising, was that women with PCOS were more likely to have a greater number of follicles in an earlier stage of development. This is what the classic PCOS presentation actually would predict.

When you understand what’s happening in the menstrual cycle and you understand the ovarian hormone cycle, you understand that at the beginning of the menstrual cycle, all of us who are menstruating have a small pool of follicles — the antral follicle pool. That’s why when they’re checking fertility, they look at your antral follicle count. We all have this little pool of follicles at the beginning of the menstrual cycle that is developing.

In a normal cycle, one of the follicles from this antral follicle pool will essentially be chosen as the dominant follicle. That follicle will go on to grow and develop and ovulate. It grows to at least 20 times the size of what it originally was. It produces the vast majority of estrogen. And then we move to ovulation.

In classic insulin-resistant PCOS, you have a situation where the body is resistant to insulin, so it’s making more of it, and that leads to hyperinsulinemia — meaning elevated levels of insulin — and that has consequences. It creates a feedback system where it disrupts the normal process that’s happening in the ovaries. So instead of having one follicle develop and grow and move towards ovulation, you end up with a situation where it’s not moving forward.

You have this pool of follicles and they’re kind of growing, they’re kind of kicking out estrogen — not necessarily the amount that they’re supposed to, because there is not one dominant follicle actually growing to the size it’s supposed to be making a significant amount of estrogen. The size of the dominant follicle is related to the amount of estrogen that’s going to be put out. You just have this pool of antral follicles in an earlier stage of development, kind of weakly kicking out estrogen, but for a longer duration of time — essentially in a holding pattern — because the classic presentation of PCOS is that this insulin issue is interfering with the natural progression of this situation.

What I just said means that women with PCOS don’t, according to the study, necessarily have problematic ovarian cysts. They actually have just an elevated number of these antral follicles in an early stage of development, just sitting there. And that is very different than concluding that women with PCOS actually have cysts that are problematic.

Going back to the study: what the researchers confirmed was that women with PCOS tended to have 20 or more follicles in at least one ovary. Approximately 62% of the women with PCOS had 20 or more follicles in at least one ovary, compared to 12% of the controls. They also tended to have a larger ovarian volume — approximately 40% of the women with PCOS had a larger ovarian volume compared to only 5% of the controls.

I often hear women with PCOS — clients and practitioners alike — say that maybe they experience menstrual pain and that their PCOS causes them pain. It’s very interesting, because there’s this idea among women with PCOS that PCOS is related to pain. What I would say is pain is actually a separate thing. You can have PCOS and period pain, you can have PCOS and endometriosis, but PCOS doesn’t inherently cause period pain.

One of the findings that the researchers shared in this paper was that women with PCOS didn’t have more endometriomas. Endometriomas in the ovary are the most common location for endometriomas, and there’s a link there with endometriosis — but what the data showed was that women with PCOS did not have a higher instance of endometriomas.

The big conclusion from their paper is that their research is showing that PCOS is causing issues with the natural progression of ovarian follicular development. But that doesn’t inherently mean that these women have problematic cysts. This is one of the main reasons why they actually changed the name — instead of polycystic ovarian syndrome, to make it seem like women have these cysts that are problematic. This paper is going into it in a little bit more detail to clarify what’s really going on. So instead of searching for cysts and being preoccupied with it, we can actually look at the polyendocrine metabolic disorder that is associated with this condition.

There were a couple of other interesting findings. When the researchers did an ultrasound on a random day, they found that just about 28% of the women with PCOS had a dominant follicle — identified by size — meaning that almost 30% were moving towards ovulation. This was compared to 33% in the controls. While this figure was not statistically significant, I think it’s worth mentioning.

If you think about it: if you just randomly check without having the women chart, and you have a group of women who generally have cycles within normal cycle parameters, then a dominant follicle would essentially be present in the pre-ovulatory phase before ovulation. It makes sense that the controls — the women without PCOS — would be more likely to show that versus the women that had PCOS. In a PCOS cycle, it’s much longer and it can take quite a bit longer for the dominant follicle to actually form.

What I’ve always found interesting about PCOS is that when women have been diagnosed, they’re often given the impression that they can’t ovulate, or they have an issue with ovulation, or there’s something wrong with it. Or even if they are ovulating occasionally and having periods, they’ll often think that they just can’t get pregnant. The idea I’ve heard from women when they talk about their own PCOS over the years is that they just think they’re infertile — that PCOS is synonymous with being infertile — as opposed to understanding that it is simply an issue that is interrupting and interfering with the normal ovulation process and making it so that it’s not happening as frequently, but it’s still happening.

I really haven’t had a PCOS client who didn’t ovulate at all. Every PCOS client I’ve worked with did ovulate. It’s just sometimes it would be 50 days apart, but they would still be ovulating. They just have really long cycles.

What’s really interesting then with this finding of their random spot check ultrasound is that almost 30% of the PCOS women had a dominant follicle, meaning that they were moving towards ovulation. It just happens a bit less frequently.

This is just further additional information to confirm that while the road to ovulation is delayed, it doesn’t mean that ovulation doesn’t work or that there’s something wrong with their ovaries. It just means that this issue with insulin resistance — which can then lead to elevated androgens, which can then interfere with the normal process of ovulation, which can then lead to these women having essentially arrested follicular development in the ovaries — results in a kind of holding pattern. This is why the cycles are so long: all these little follicles are just hanging around waiting for the conditions to be right for one of them to develop.

In addition to the scans they did to determine how many participants had a dominant follicle, they also did a random scan to see what was going on. About 28% of the women with PCOS actually showed the development of the corpus luteum, versus 37% in the controls. The corpus luteum wouldn’t be there if they hadn’t ovulated. So approximately 28% of the women with PCOS had ovulated, versus about 37% of the controls.

That makes perfect sense to me because the average cycle length of a woman with PCOS is a lot longer than the average cycle length of a woman without. If you do a random check, of course you’re going to have way more women with PCOS who haven’t yet ovulated because of everything we talked about. Essentially what the researchers are stumbling on with all their tests and random scans is that it takes women with PCOS longer to ovulate. That’s it. That’s what they found.

What do we do with this information? What do we conclude? Like I said in last week’s episode, I do think it’s a positive step forward for the research community and medical community to be looking more deeply into PCOS and being more precise with their language in terms of what it is. I do think that there’s a benefit of actually looking at the process, getting into the weeds, and finding out what’s actually happening and adjusting your language to more accurately reflect what’s going on.

A lot of the ways that PCOS has been talked about over the years — just kind of flippantly telling women, “Oh, you just need to lose weight, that’s the solution,” or “You just need to go on the pill, and then when you’re ready to get pregnant, just come back and we’ll give you IVF” — having all these women with PCOS assume that it means they can’t get pregnant, and having nobody really explain to them what’s happening in the cycle — this is different than having all these problematic cysts in the ovaries for no reason. This is a metabolic issue.

If we resolve that metabolic piece for the majority of women with this condition and actually address the insulin resistance, address the inflammation, address what’s happening with the elevated androgen levels — if you remove the factors that are interfering with the normal progression of ovulation, then she will ovulate at a more optimal schedule. Of course, it’s complex. There’s so much research on it. But the concept itself is actually pretty easy to understand.

I think this is why when women learn about the menstrual cycle, learn about fertility awareness, start charting their cycles and start to understand how this all works — yes, there’s complexity, there’s a lot of nuance — but at a fundamental level, it’s fairly straightforward to understand what’s happening in the menstrual cycle once you’ve been educated about the different processes.

This is the reason why when women learn this information — listening to the podcast, going through the research series, all of these things — so many of the women I’ve spoken to over the years who’ve read my books are like, “What is going on? How did I not know this stuff?” The amount of women that have come to me who are women’s health professionals — who went to medical school, to nutrition school, to midwifery college — and then say, “I didn’t learn this stuff that you’re teaching.” On the one hand, sure, there’s nuance. But on the other hand, it’s not necessarily that complicated, at least at the conceptual level.

That’s essentially what I wanted to share today. I wanted to go through this study because I thought it was really interesting that it took all these researchers, all these years, for someone to just ask the question. Someone just said: if this condition is identified by ovarian cysts, why don’t we just study the presence or absence of cysts in women with and without PCOS and see what the difference is?

The bottom line — the conclusion — is that women with PCOS do not have a higher rate of pathological or problematic ovarian cysts compared to women without PCOS. What they have is an arrested stage of the normal follicular development that is supposed to take place in the ovary. The issue is not with the cysts themselves. The issue is with the metabolic and endocrine issues that are interfering with ovulation.

While we have been talking about that kind of stuff on the podcast for many years, and many practitioners have been trying to educate about this and increase awareness, it seems that now the research and medical population have come on board.

I hope that you enjoyed today’s episode. If you didn’t catch last week’s episode — the episode previous to this one — these two go great together. That episode was more focused on the name change, and this episode was more focused on the cyst conversation and the interesting findings of this study.

I’m always excited to see science advance, to see more nuance, and to see more specific and intentional language and focus put on this issue. I think that ultimately the results will be good. Last week I shared my skepticism in terms of whether this is really going to change what we’re doing about it. I’m really excited about the change of focus, learning more about what this condition really is, giving it an appropriate name, and really getting into the weeds of what’s going on in the ovaries and how that relates to the hormones and to metabolism. I’m all about it. But I am still not convinced that all of a sudden we’re going to see a totally different way of treating it. But who knows — maybe they’ll surprise us. We’ll just have to wait and see.

I hope you have a wonderful week — whenever you’re tuning into the show. And as always, until next time, be well and happy charting.