21min chapter

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#436 Endometriosis for the Internist with Dr. Cope & Dr. Green

The Curbsiders Internal Medicine Podcast

CHAPTER

Understanding the Complexities of Endometriosis Diagnosis

The chapter delves into the challenges associated with diagnosing endometriosis, emphasizing the lack of definitive noninvasive diagnostic tests. It discusses the evolving approach to diagnosing and treating endometriosis, highlighting the importance of considering various imaging modalities and potential markers for severe disease. The speakers stress the prevalence and debilitating nature of endometriosis, urging for better diagnostic practices to improve patient outcomes.

00:00
Speaker 3
I did want to go back to the pathogenesis so we don't move past that. How much do we know about where this comes from or how this starts? I feel like I was taught about retrograde menstruation somewhere in medical school maybe when I was prepping for this episode, that kind of rang a bell. Where do we think this comes from and how does this all begin, do
Speaker 1
we think? A million dollar question, so definitely something that's been studied and not retrograde menstruation. That would not explain thoracic endo diaphragm and enmitrusive, enmitrusive in patients that are not menstruating or that don't have a uterus but have ovaries. Definitely not that. The question is that idea of whether it has to do with changes in a cell, so sort of a misdirected cell line developing into endometriosis. Lots of questions right now of where it comes from. What's hopeful is that as the basic scientists start looking more and more into those processes, we might be able to learn more for better therapeutics since we're really limited right now in the therapeutics that we have based on the idea of that definition being that it's just the endometrium. You'll hear a lot of us say it's not quite just the endometrium but we can't quite define it yet.
Speaker 5
There's a lot of work looking at the immune
Speaker 2
system as well and microbiome factors.
Speaker 5
There's a lot of different angles that people are looking at this disease process but I think as far as how all of those different factors
Speaker 2
interact together and how that
Speaker 5
translates into the multiple different phenotypes that Isabel talked about. We don't really understand that unfortunately at this point in time but there's a lot of great questions out there that people are looking
Speaker 1
into. And whether things are like the driver of the disease or coexist with the disease, so still a lot to tease out
Speaker 3
there. A few minutes ago you mentioned that depending on when you see a woman in their course, it may be a different picture. Can you talk about what you think of as the course of endometriosis over the lifespan?
Speaker 1
Yeah, so it's not necessarily a progressive disease in some patients in the sense that it may not worsen over time but one of the challenges with patients is that while we classically would see them at the time of menarchy with painful periods and that might be a time where we'll think of endo, we may be most likely to think of endo at that time because it's a new event. The challenges I think with the lack of awareness among providers and I'm so glad we're here doing this podcast because this is a great step. But then also like the stigma and normalization of pain with men's disease is that in sort of that seven to ten years that it takes the average patient to be diagnosed with endo, you have a couple of things that might be happening because endo patients are at higher risk for both central sensitization and chronic overlapping pain condition. So I kind of think about it as they can almost like acquire more disability, broader symptomatology and more pain severity than they might have had earlier. So they may present with pelvic pain and TMJ and chronic low back pain. Those are classic overlapping pain conditions or irritable bowel syndrome and intercystitis. So patients disease may present differently because they're seeking fertility now or they've gone on hormone replacement and things have changed or they were on the birth control pill for 17 years and then came off of it. So a lot of people go on the pill early. So there may be differences in sort of how the diseases is showing up. But then on top of that, they present differently because a lot of them have had sort of this opportunity to acquire more illness and sort of more impact over time. So it kind of makes it harder to like find the trees in the forest, right? But endo is one of the main trees in their symptomatology and sort of attack that one along with the other ones. Does that make sense? So sort of like it can get overwhelming when someone with chronic pelvic pain comes into your practice and they've never had a diagnosis of endo and it's important to still think of endo in that patient the same way we want you to think of endo in a patient with primary dysmenorrhea or painful periods. But yeah, we do see interesting things like I was doing great and then I stopped the pill to try to get pregnant and now I'm experiencing all these symptoms of painful periods or I always thought my periods were painful but manageable but now I have pain with intercourse. So it might be that some things changed in their own sort of environment, whether that's hormonal or due to other medical conditions that we're not sure of or just due to the cronicity of it and the acquiring of other pain conditions and central sensitization. So not every patient may look the same.
Speaker 4
And I'm wondering if you could just really briefly run through what would your differential be for this patient? Because as you said, there's so many things that could be possibly going on but just kind of give us a summary of what we should be thinking about and considering.
Speaker 1
Yeah, I mean obviously endo. That's my work here. So endo, retriosis is on there. So you mentioned Paul, you know, primary dysmenaria and that's a legitimate disorder as well. So painful menses that's not secondary to endo, that's probably due to the inflammatory nature of menses and, you know, the uterus and the cytokines and the prostaglandins and all of that. So that's definitely on our list too. We'll treat patients initially not knowing if it's primary, you know, dysmenorrhea or endometriosis. But then, you know, I mentioned just now like overlapping pain conditions exist. And so it's pretty crazy. So a patient with endometriosis is at higher risk for developing other pain disorders. So they have like five times the risk of developing IBS, so irritable bowel syndrome. So this patient could have endo as a cause of all their symptoms, right? If it's involving the bladder, if it's involving the peritoneum over the bladder, if it's involving the bowel, right? Because she had a lot of different systems systems or she or they could have endo plus, you know, IBS or endo plus painful bladder syndrome. Or I think one of the most important ones is endo plus myofascial pain. So hopefully we can spend a little bit of time talking about that, but that's tender or taught pelvic floor muscles that can contribute to some daily pain, some voiding dysfunction, some defecatory dysfunction. So this particular patient, you know, kind of started in one category, right? Painful periods. And now it's not always during her period. And it's kind of recruiting other organ systems. Yes, that could be endo, but that could also be myofascial pain. And we definitely want to think about that because we're going to treat that totally differently, right? We're not going to treat that hormone only or surgically. We're going to treat that with physical therapy. And we'll get a lot of referrals for surgery for like, ooh, forectomy when someone really just has, you know, a tender trigger point in their pelvic floor and really needs PT. So we can avoid a lot of surgery by almost tunnel visioning to endo and blaming everything on endo. So I'm going to ask you to do two things, right? Sometimes always think endo and sometimes think of other things besides endo. So this is a great example of a patient that it could be
Speaker 3
either. And Paul and I just did a show recently on recurrent UTI with your organicologist. And she was, she was mentioning that, that, you know, that the myofascial pain and when she's doing the exam, just feeling for tender points. And sometimes that's what it is. And pelvic, she said her pelvic physical therapist that she refers to as like her favorite person because she's able to help a lot of her patients with that referral.
Speaker 1
Yeah, that's a huge partner for us as our, as our physical therapist for our endo patients and our pain patients that don't ultimately have
Speaker 3
endometriosis. And I think all of us in primary care, like we, we do get these patients that have these clusters of symptoms where they have IBS and they have painful bladder syndrome and maybe fibromyalgia, migraine headaches and chronic fatigue symptoms that they'll complain of. And now endometriosis wasn't something I was thinking about, but now I'm going to have to kind of re-examine some of these cases and think about because I know we're going to talk about imaging or maybe now is a time to talk about a little bit more about the actual diagnosis because, you know, what, what do you do to try to sort that out? I guess would be where we're going is, are we ready for that question now, Carolyn? Are we have anything else? Paul always accused me of jumping in the gun. That's why I'm asking. We're writing it.
Speaker 1
I know I do. I think it's good. I've asking you to try to separate these things, but we haven't talked about how you can try to separate them. Tell
Speaker 3
us, please. Yeah. So a day, how, how do we do
Speaker 2
that? You know, it's very, very challenging. There's a lot of overlap and we do not have great, noninvasive diagnostic testing for endometriosis, unfortunately, for a lot of our patients who have this disease. You know, we talked about imaging labs, physical exam findings. Those are all great things to make sure you're not missing anything else,
Speaker 5
but there are some limitations with those. I would say in terms of having a
Speaker 2
diagnosis of endometriosis, a lot of the time it's going to be a suspected diagnosis saying they have features of the disease, things that sound suspicious for endometriosis, the symptoms they have. And so that's oftentimes what we're working with to start. It is something where obviously, as Isabel mentioned, you want to make sure to think about all of these other things that can coexist and do an assessment for each of those. Exam is very important for those and any other labs that you might be thinking about to assess for other etiologies contributing to pain that could be acute causes or other structures or other organ systems.
Speaker 5
When it comes to
Speaker 2
labs for endometriosis, there have been biomarkers that have been looked at, but unfortunately, we don't have any good ones that are out on the market where we would be able to use them for clinical practice at this point in time. Maybe someday we'll have something but aren't quite there yet. With imaging, it really depends on what imaging is done. It depends on the protocols that are done when the imaging is performed. It depends on who's reading the imaging. And all of those factors can impact the sensitivity and specificity for identifying disease and are very important to weigh when you're trying to determine how much weight can I put on this imaging study when the clinical suspicion is there that the disease could be present. And I think first and foremost, it's important to be aware too that even if all of your workup comes back negative, all of the imaging is negative, that does not tell you for sure that you do not have endometriosis because it can be difficult even to diagnose at the time of a laparoscopy depending on the eyes that are doing the procedure and looking for lesions and all of that can impact timing to diagnosis as well for patients.
Speaker 3
And you mentioned the suspected diagnosis because it was interesting like reading review articles from 2020, they were saying like surgery is sort of the standard for diagnosis. And then the more recent ones, even like a year or two later, were saying now it's becoming more like a suspected diagnosis, you can kind of start treating based on that because not everyone's going to benefit from surgery. So you do want to avoid that if you
Speaker 5
can. Exactly.
Speaker 2
And I think there's nothing that says you have to confirm presence of disease to start treatment. It's perfectly reasonable and important to provide medical intervention for these patients, even without a confirmatory test like a laparoscopy or obvious findings on imaging.
Speaker 3
Is there anything like this is like a vague and perhaps dumb question, but that's kind of my role here. But is there anything is like a well score for like high likelihood versus the likelihood that people are working on based on like clinical risk factors and symptomatology?
Speaker 2
You know, depending on the society that you look at, they have different flow charts to have all of these different presenting symptoms that patients can have. In general, if they have dysmenorrhea, dysperonia, dyscecia, those are kind of the 3D's you want to think about, there's a very high likelihood they could have enemy triosis. I think that in terms of exact scores, there aren't any that I'm aware of. Are there any that you're aware of as a pal?
Speaker 1
No, I think the way I think about it is it's easier to sort of assume at the very beginning if they have those symptoms. And then I would say that your imaging at the onset of your treatment is trying to rule out sort of disease that may need an earlier surgical consult. So if I thought of myself as an internist, I'd say, you know, what do I need to at least get treatment started? And I'd say the history is sufficient. The imaging is going to help me make sure that they don't have an endometrioma that the ovaries aren't like stuck behind the uterus in an abnormal position. And then like a daily was saying, depending on your access to things, you know, does my ultrasound tech do a sliding sign to see if the rectum is scarred to the back of the uterus? So it's almost like the absence of positive findings can keep that patient in your clinic and not maybe get that early referral for a surgical consult. But the absence of findings does not rule out endometriosis, if that makes sense. So we're trying to look for almost obvious disease with imaging at the initial onset of your evaluation and sort of, you know, you're looking at your symptoms. And in younger patients, that could be just an abdominal ultrasound. So it doesn't necessarily need to be transvaginal since we're sort of trying to rule out really bulky disease that the best treatment would be to start with medical management. Does that help in terms of the imaging? I feel like we use it in a funny way. You know, we use it to rule out the really bad stuff, but oftentimes you'll see this normal pelvic ultrasound and that's almost, you know, more anxiety provoking to patients because they're like, I feel this, you know, and it's good to really validate that that doesn't mean that there isn't disease or that their uterus doesn't have this crazy cytokine reaction to their period. You know, it's very real. We're just not seeing sort of dramatic disease with the tests that we have. And Adela can talk about stuff too, but we use imaging at our level for surgical planning to really look for much smaller findings.
Speaker 4
So it sounds like the routine primary care duct shouldn't be ordering an MRI.
Speaker 2
I would say not necessarily. I think it depends. I think that, you know, MRI definitely can have a role. And I think a lot of it depends too on what access you have. So it can be very confusing to look at the literature because depending on where the studies were done, the countries, the studies were done, the different protocols that were used to help identify enemy triosis that has a huge impact on ability to detect disease. And I think that it's great to start with a screening pelvic ultrasound to start for these patients. As Isabel said, you know, it doesn't even necessarily need to be a transvaginal ultrasound, though that can be helpful if the patient is able to tolerate that and of a, you know, right age group where that's amenable for them to have that done. But it is something where if you see signs that there could be more severe disease present, so say that they have enemy triomas, they have a fixed uterus, the sliding sign is not showing good slide between the rectum and the uterus. We have kissing ovaries where the ovaries are being pulled behind the uterus. All of those could be markers from worst severe disease. And in the absence of a more specialized, prepped, focused, hands-on ultrasound with a trained sonographer or radiologist, it's, ultrasound is not going to be sensitive to pick that up. And I think that pelvic MRI can be very helpful for those patients or if you're suspecting disease outside of the pelvis because that can be very important to help guide. Do I need to refer to a surgeon when the ultrasound might not be sufficient to detect those subtypes of disease that are less common, but certainly do exist and do, you know, require additional
Speaker 5
looks with other imaging modalities.
Speaker 3
You mentioned like the adhesions, the standard transvaginal ultrasound. I don't usually see that reported on. So is that more the advanced, like you have to have a technician that's trained in looking for endometriosis to call those
Speaker 2
things? Not necessarily. I think that those are little maneuvers that you can train sonographers to add to the screening ultrasound that can add additional benefit to assessment. The more kind of specialized focused ultrasounds that are used in endometriosis centers, they typically involve a bowel prep and are really focused in different areas with a specialized trained person. And so that's kind of the difference between those two. These can be incorporated in screening scans that can be very helpful when you don't have that specialized equipment or training and are easy interventions that you can add to
Speaker 5
a basic screening pelvic ultrasound that can add additional sensitivity to look for markers of endometriosis.
Speaker 1
MRI can also be helpful, I think, when you've had that normal ultrasound and they're not responding to treatment and you maybe want to look a little bit deeper, but that still sort of requires a specialized protocol so that they'll report on, you know, two millimeters of disease, five millimeters of disease, things like that. But that's another area where we might expand our diagnostics to MRI from ultrasound. And I wanted to also say that one of the big challenges is that people may move from doctor to doctor and like doctors will sort of start over. So that can be really frustrating to patients. So trying to build on what they've already had done and not kind of be like, right, I'm supposed to do this first and this first, you know, and be like, oh, wait, this has already been done. Let's maybe move on to the next step. And that's hard in our world, but, you know, the EMR is helping us kind of see what people have had before and that's one of the benefits. So we're not reordering all the same things, starting the same treatments, giving the same time to see if things work. So that can be really frustrating if people have moved from physician to physician. As you know, that happens, you know, in all of our disease conditions. So not just unique to endo.
Speaker 3
Paul, this seems like these patients have to have five CAT scans from five different doctors before someone thinks to order a pelvic MRI because they're not even thinking about endometriosis. Don't you don't you feel like that's got to be the case? Yeah. Yes. Yeah. I feel like it has this just sounds endlessly frustrating potentially. Yeah. And that's the end of that sentence. Yeah. So a day is that I don't know if that's what you you all see as a pitfall, but because like, I think most primary care doctors would just be like, okay, this person has chronic abdominal or pelvic pain. CAT scan is my image. You know, maybe they'll get a pelvic ultrasound and they won't see anything. And then they're going to jump to a CAT scan because that's sort of mostly what we deal in. We're dealing with MRIs more for like the spine or the brain. So I just imagine that that's happening.
Speaker 2
It is. And we'll get referrals where they will have had a CT scan that shows maybe something in the pelvis. Is it a uterine mass is an adenexal
Speaker 5
mass? And then no pelvic ultrasound, which better delineates all of those structures.
Speaker 2
Really, there are a lot of limitations with CT in terms of assessing for enemy triosis and just the pelvic organs in general. Really in our field, we think of that more as a tool for when you're trying to assess staging for malignancy rather than actually looking closely at the uterus and the ovaries and the surrounding structures from a
Speaker 5
GYN lens.
Speaker 3
Well, it's almost a little bit of the whole past, not to be. But if you get a CT scan and it comes back reasonably normally, you're like, well, at least it's nothing that's going to kill you. And I think it's kind of easy to sort of stop there even though that does not mean you're not debilitated and there's not certainly sequelae from this not being managed well.
Speaker 1
And I think that's where the awareness of how prevalent this is, right? So think about the fact that it's like as prevalent as type two diabetes. That's crazy. Even that it's debilitating. And I think that patients move on to other doctors. If you don't also potentially get the benefit of questioning your last move, right? Like the reality of medicine is sometimes it takes us some time to think about what we want to do next. So that can be sort of an added layer of challenge here.

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