The New PCOS/PMOS Guidelines | What Changed and What’s Missing (Episode 636)

Full Transcript: Episode 636

Lisa Hendrickson-Jack:

This is the Fertility Friday podcast, episode number 636. Today’s episode is another follow-up from the few episodes I’ve done on the changes to the PCOS definition, the polyendocrine metabolic ovary syndrome. Today I’m actually going over a paper that came out in 2023, because this paper is kind of like the precursor for the recent changes. This was an international evidence-based guideline for the assessment and management of polycystic ovary syndrome. I’ll be using the previous language, or I might say PMOS. But either way, this represented an update in how this condition is diagnosed. And of course, these changes carried over into the new official consensus statement about the name change for this condition.

I’m just going to be going over this paper and talking about what really stood out to me in these changed guidelines. Many of you may be aware of these new guidelines. The condition itself hasn’t changed, and ultimately the guidelines aren’t that different either. They’ve just added a few key pieces, a few key changes based on the research.

This paper is bringing together information from 52 systematic reviews, 39 professional and consumer organizations across 71 countries. This has been going on for a long time, similar to the name change. This paper represents the culmination of the examination of the evidence and what they’ve come to in terms of what they want to update. This is the most comprehensive evidence-based reference document that exists for how to diagnose and manage PCOS, now PMOS. It was put together by 39 organizations, spanning 71 countries, and they reviewed over 6,000 pages of evidence. This resulted in 254 recommendations covering everything from diagnosis to fertility treatment to mental health. We’re not going to be going over the 254 recommendations, but we’re going to be talking about some of the key pieces that really stood out to me.

I’ll start with one of the main changes to the diagnosis protocol. One of the biggest changes that they made in this 2023 document was that AMH testing can now replace ultrasound for PCOS diagnosis in adult women. There are a few caveats. This change is only meant for adult women. It is not meant to be a way to diagnose youth, younger women, teens.

What’s interesting is that even in Real Food for Fertility, this was one of the key characteristics of PCOS, which was the elevated AMH levels. There’s plenty of research that would indicate that elevated AMH levels may indeed be considered a sign of PCOS and could in the future be added to the official guidelines. This is exactly what happened here. That’s because one of the characteristics of this condition, PMOS, PCOS, as we are in this transition phase, is that we have this ovary that has multiple immature follicles in early stages of development before one is chosen to move to ovulation. As a result, when you have this larger pool of follicles in the ovary itself, the AMH levels are elevated in women with this condition. It actually makes a lot of sense.

Essentially what they’re saying is that if a woman has long and irregular cycles and she has elevated AMH, that in and of itself is sufficient for a diagnosis, for example. They’re saying either AMH or ultrasound may be used, but both should not be done, to limit overdiagnosis. They’re acknowledging that elevated AMH in and of itself, in combination with the other two general criteria, which would be the irregular cycles or elevated androgens, can be enough for the diagnosis. It’s still two of the three; it’s just that now it’s the ultrasound or AMH as one of the three.

If you have a client who has irregular cycles and signs of hyperandrogenism, which we’ll talk about more in a second, then they wouldn’t need to test the AMH. But if you had a client who had irregular cycles and she had tested for elevated AMH levels, then an ultrasound would not be needed, nor would testing for androgens. Those two criteria alone, the irregular cycles and elevated AMH, would be sufficient for diagnosis.

A quote from the paper, to emphasize this, the researchers said: “AMH was highlighted as a rapidly evolving area in 2018, and evidence is now strong enough to make this new recommendation. This will significantly change practice and offers women a low-cost, convenient option without evidence of overdiagnosis.”

What I like about this is that this is actually just simply following the research, because this is where the research was going even many years ago. The caveat is that this is meant to be used for adult women, not teenagers.

Another change that they made that stood out to me is what they would classify as a simplified diagnostic strategy. They’re really stressing here, and what’s interesting is that I suppose the biggest change is that clinical hyperandrogenism is really considered to be sufficient for diagnosis in conjunction with the other two. We’re still looking at two out of three criteria, but those criteria have been expanded and, I suppose, better defined.

If you have a client who has irregular cycles and signs of clinical hyperandrogenism, so that would include hirsutism, the extensive hair growth, or even cystic acne, irregular cycles plus those clinical signs of hyperandrogenism, without needing a blood test, would also be sufficient for a diagnosis. If you had a client with irregular cycles but no clinical signs of hyperandrogenism, no hirsutism, no cystic acne, none of these signs that are typically associated with elevated androgens, at that point they would say, let’s test for the blood levels to see what’s going on.

The third part of that is that if you have only irregular cycles or only hyperandrogenism, only then would you consider requesting an ultrasound, or, as we talked about, looking for those elevated AMH levels in adults. In adolescents, they’re saying that ultrasound should not be used for a PCOS diagnosis. They’re saying both hyperandrogenism and ovulatory function are required for a diagnosis in teens. This appears to be a specific strategy to prevent overdiagnosis in teens.

Instead of saying that if you have only irregular cycles or hyperandrogenism, get an ultrasound, they’re saying that in adolescence they might be put into an “at risk” category to reassess later. So in adolescence, ultrasound should not be used for PCOS diagnosis, and both hyperandrogenism and ovulatory dysfunction would be required.

I think this is really interesting because they are identifying an issue with overdiagnosis in teenagers. It is common in the first few years after menarche for teenage girls to have longer cycles and even a short period of irregular cycles, because the average length for a teenage girl within the first few years of menarche is actually 21 to 45 days. Even the average markers are different for women at that stage. Jumping to an ultrasound and giving a diagnosis very early, before the cycle has matured, may not be the best idea.

Compared to the Rotterdam criteria, which were in place for quite some time, these guidelines provide a more specific step-by-step approach to diagnosing PCOS. The very first step actually involves looking at the menstrual cycles, preventing the overuse of ultrasounds and the dependence and reliance on ultrasounds when really this condition could be identified with irregular cycles and signs of elevated androgens or even the AMH, as we talked about.

It’s really interesting to see how they are specifying this condition. Having this as the precursor to the name change also makes a lot of sense. They are de-emphasizing the reliance on the ovarian cyst conversation and the ultrasounds, though that can still be part of the diagnostic routine — it’s just not meant to be the center of it. We can’t just say, “you’ve got cysts on the ovaries, therefore you have PCOS or polycystic ovaries,” and really need to focus on the other aspects of this condition.

Something else that stood out to me was that within this document, one of their main focuses was highlighting and emphasizing the frequency with which women with this condition of PMOS or PCOS have depression and anxiety. They actually included a very strong recommendation to screen all adult women with PCOS for anxiety and depression. They also encourage clinicians to screen for eating disorders or disordered eating patterns, because there is a very strong correlation between PCOS, now PMOS, and depression, anxiety, and disordered eating patterns.

A quote from the paper: “Healthcare professionals should be aware of the high prevalence of moderate to severe depressive symptoms and depression in adults and adolescents with PCOS and should screen for depression in all adults and adolescents with PCOS using regionally validated screening tools.”

They’re really trying to highlight that this is an issue. We see a strong correlation. Many years ago, I had an episode that focused on this aspect of PCOS — we’ll link it in the show notes page. Regardless, this has been identified in the research; it doesn’t take long to do a search to find how prevalent this is. It’s interesting and encouraging to see the clinicians who put this together, and the researchers, really highlight and focus on this.

Another thing that stood out to me was that they are really trying to destigmatize the association between PCOS and weight gain. Weight stigma is now addressed in the clinical guidelines, with guidelines for encouraging lifestyle changes and improvements in habits without the main focus being weight loss. I think the reason for this is that it’s very typical for women who are of a higher BMI who also have PCOS, PMOS, to simply be told, “lose weight” — that’s it. So this updated guideline is meant to focus more on certain lifestyle changes instead of making it just about weight loss, because if you follow a variety of specific lifestyle changes, the weight loss may follow, but the overall parameters may also improve.

A quote from the paper: “Healthcare professionals should be aware of weight-inclusive practices, which promote acceptance of and respect for body size diversity, and focus on improvement of health behaviors and health outcomes for people of all sizes.”

They’re trying to get around the general issue where women with PCOS who are of a higher BMI are simply told to lose weight, which misses the mark.

I do want to point something out — the last point I wanted to highlight was something that they didn’t say, something that they didn’t focus on. This guideline document is well put together, well researched, very thorough, and it addresses a whole host of issues, even the weight issue. But the one thing that it did not address, at least that I didn’t see specifically, was the issue of lean PCOS.

The term “lean PCOS” may not be an official term, but there’s enough research — if you search for research on lean PCOS, it is a phenomenon — because there are women who are not of a higher BMI level, who are of normal weight, who still struggle with this condition. And you’ll notice, when we went through the diagnostic criteria, none of the criteria specified that the woman needed to be overweight. There was no BMI-specific criteria for diagnosis. The diagnosis is based on irregular cycles, high androgens, and either elevated AMH levels or the increased number of follicles in the ovaries or increased ovary volume. It is not saying that you also need to be of a higher BMI.

Ironically, the diagnostic criteria for PCOS, PMOS, actually has nothing to do with BMI. But of course, there is a percentage of women who have this condition who have an elevated BMI. What I have found after many years working with women through cycle charting is that there are plenty of women who actually meet the clinical guidelines for what this condition is, who are not overweight. But because they’re not overweight, doctors will say, “well, no, you couldn’t have PCOS,” because in their minds they’re associating PCOS with an elevated BMI level.

This is a problem, and it’s not addressed anywhere in this paper. They’re going so far to say, “you’re stigmatizing women, you’re telling them to lose weight” — which is a legitimate problem, there’s plenty of research on it — instead of even acknowledging lifestyle changes in the general sense, they just tell these women to go lose weight. So that is a big problem. But on the other hand, women who may not meet that kind of physical, anticipated elevated BMI may be falling through the cracks and may sometimes not be diagnosed because doctors have this preconceived notion that women with PCOS, PMOS, are overweight.

I did want to mention that, I did want to state that, because I didn’t see it in the paper, and it’s surprising, given how thorough the paper is and how much care they took to really carefully clarify this condition and improve and specify the diagnostic criteria, that they didn’t really mention this phenomenon of practitioners underdiagnosing women if they don’t meet that kind of weight expectation.

With that said, I think this is a fantastic improvement. I think it’s really exciting to actually see changes being made as a result of the research that we’re seeing. It’s important to acknowledge that we’re actually seeing progress in this area, and it is a really exciting time. What a time to be alive — who would have thought that we actually got to the place where they’re changing the name, updating the diagnostic protocols, and really working to make this condition easier to diagnose for women and really supporting women with this condition.

As I always say, it will remain to be seen what happens out of this. It’ll remain to be seen how soon these changes hit a doctor’s office near you. But again, still very, very encouraging. If you can think of someone who would benefit from this episode, feel free to share this episode. If you’re listening in your favorite podcast player, you can share the link there. You can head over to fertilityfriday.com for this episode, episode 636, for the link to the research papers and everything that we talked about in today’s episode.

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.