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BackTable / OBGYN / Article
Thoracic Endometriosis Diagnosis: Identification & Evaluation
Sophie Frankenthal • Updated Nov 4, 2024 • 53 hits
Endometriosis is a complex gynecologic condition in which endometrial tissue grows outside the uterus. Thoracic Endometriosis is a lesser-known manifestation of the condition and is characterized by the presence of extra-pelvic lesions within the thoracic cavity, primarily affecting the diaphragm. Although it is often asymptomatic, thoracic endometriosis can present with symptoms that are mistakenly attributed to primary pulmonary conditions, complicating accurate diagnosis and delaying appropriate care.
Drawing on her experience as a gynecologic surgeon, Dr. Shanti Mohling sheds light on the challenges of identifying thoracic endometriosis. Her insights emphasize the importance of non-traditional detection methods and collaborative, multidisciplinary approaches to improve diagnostic accuracy and patient outcomes.
This article features excerpts from the BackTable OBGYN Podcast. We’ve provided the highlight reel in this article, and you can listen to the full podcast below.
The BackTable OBGYN Brief
• Thoracic endometriosis is often overlooked due to its atypical, extra-pelvic presentation, with thoracic symptoms often eluding gynecologists, and its endometrial origins often eluding other specialties that focus on the thoracic symptoms.
• Up to 12% of patients presenting with advanced endometriosis display diaphragmatic disease, and some experience pulmonary involvement.
• Identification of thoracic endometriosis necessitates an integrative approach to diagnosis, including methods such as history-taking, physical exam, ultrasound, and surgical exploration.
• Clinician expertise and intuition play a critical role in the diagnosis of thoracic endometriosis when traditional diagnostic methods fail to detect extra-pelvic involvement.
• Multidisciplinary communication and collaboration can improve diagnostic accuracy and patient outcomes in cases of invasive endometriosis.
Table of Contents
(1) Beyond the Pelvis: What is Thoracic Endometriosis?
(2) How is Thoracic Endometriosis Diagnosed?
(3) Multidisciplinary Challenges in the Detection of Thoracic Endometriosis
Beyond the Pelvis: What is Thoracic Endometriosis?
Thoracic endometriosis is an underappreciated condition given that it deviates from the general understanding of endometriosis as a pelvic disease. Although primarily characterized by the presence of lesions on the diaphragm, thoracic endometriosis can also extend to the pleura and even into the lung. Whereas thoracic endometriosis may remain asymptomatic even with full-thickness diaphragmatic lesions, presentation with catamenial pneumothorax indicates pulmonary involvement. Understanding this distinction is critical for clinicians, as it directly impacts symptom presentation and diagnostic approach.
Dr. Shanti Mohling cites that up to 12% of patients presenting with advanced endometriosis experience extra-pelvic involvement, most notably in the diaphragm. Despite its significant prevalence, thoracic endometriosis often eludes detection due to its atypical manifestation and therefore remains poorly understood. Dr. Mohling advocates for increased interdisciplinary awareness of thoracic manifestations, emphasizing that educating ancillary providers on these lesser-known complications may improve patient outcomes.
[Dr. Mark Hoffman]
…I think most of us think about endometriosis as a pelvic disease or disease that typically resides in and around, including primarily pelvic structures, but we see it on the diaphragm. I'm not sure most of us know what to do with it, but ultimately, talk about those patients that you see, or in whom you may suspect thoracic endometriosis.
[Dr. Shanti Mohling]
Yes, right. That's the biggest question. In a way, I suspect it in everyone. Just, I think it's more prevalent than we realize, although the numbers are that it's going to be up to 12% of people with invasive endometriosis, advanced endometriosis, that are also going to have extra pelvic disease.
…
[Dr. Shanti Mohling]
I think that one thing that's very important to clarify is that one of the symptoms we talk about is catamenial pneumothorax. Really, that is more a pulmonary pleura disease, more than a diaphragmatic disease. You can have diaphragmatic disease and even full thickness and never have a pneumothorax if you don't have pulmonary disease.
…
[Dr. Shanti Mohling]
Remember that if you've got advanced endo, you're going to have about up to 12% chance of having diaphragmatic disease. I see a lot of patients with Stage 4 endo.
[Dr. Mark Hoffman]
What percent of those are going to have pulmonary disease though that are going to have–
[Dr. Shanti Mohling]
Much lower.
…
[Dr. Mark Hoffman]
…We talk about thoracic endometriosis, we talk about endometriosis, I was thinking more like diaphragmatic, but it's not thoraxes, the diaphragm, as we see it from the peritoneal cavity, from the abdominal cavity. Now with pneumothoraces, you're talking about endometriosis that is in the pleura, inside the chest cavity, is that what you're describing?
[Dr. Shanti Mohling]
Yes, and even into the lung. Yes, exactly.
[Dr. Mark Hoffman]
Into the lung, okay. That is far out there, not in terms of make-believe, but it's something that we just don't talk about much in our world,-
[Dr. Shanti Mohling]
Right.
[Dr. Mark Hoffman]
-but that you're here to tell us that it is something we need to be talking about in our world.
[Dr. Shanti Mohling]
Absolutely. We need to educate our other ancillary providers that this is an issue that we could share and we might get better outcomes for the patient.
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How is Thoracic Endometriosis Diagnosed?
Dr. Shanti Mohling emphasizes a comprehensive and multidisciplinary approach to evaluating endometriosis, particularly when thoracic involvement is suspected. The diagnostic process begins with thorough history-taking and physical examination, with a focus on pulmonary symptoms such as chest pain and catamenial pneumothorax. Mohling prioritizes performing her own ultrasound in conjunction with a pelvic exam, where she observes for structural adhesion that may indicate the presence of disease. Additionally, Mohling advocates for in-depth intraoperative inspection of the upper abdomen, using reverse Trendelenburg positioning and a 30-degree camera to visualize key areas, including the diaphragm and liver.
In cases suggestive of pulmonary involvement, consulting with specialists such as thoracic surgeons can facilitate a collaborative approach, enabling options such as video-assisted thoracoscopic surgery (VATS) when necessary. This partnership has become instrumental for patients with complex or recurrent symptoms, allowing for timely detection and targeted treatment.
[Dr. Shanti Mohling]
…I practice at Northwest Endometriosis and Pelvic Surgery with Dr. Nic Fogelson, who started that practice. It's been the best place to land. It's been the best clinical setting that I've had in my career. Partly because Fogelson and I see really eye-to-eye on our care…
[Dr. Mark Hoffman]
When you say you guys see eye-to-eye, what do you mean by that? I say that meaning, what is specific about the way you two practice that may be unique compared to other, not just general OBGYNs, but other minimally invasive GYN surgeons?
[Dr. Shanti Mohling]
… We both do a very similar history-taking. I think it's super thorough. It's listening to all the components of the pain. Then we do a very comprehensive, or super comprehensive exam that includes doing our own ultrasounds, looking for disease, looking for movement of the structures in the pelvis. Then similar methodology for when we might order an MRI, when we might use a consultant. We're both very lucky to work with a group of general surgeons who includes a foregut surgeon who can do VATS for us, which is video-assisted thoracoscopic surgery for those who don't know.
…
[Dr. Mark Hoffman]
Patient safety is always first. Let's start in the clinic. A patient comes to see you. We're talking about thoracic endometriosis today. I think most of us think about endometriosis as a pelvic disease or disease that typically resides in and around, including primarily pelvic structures, but we see it on the diaphragm. I'm not sure most of us know what to do with it, but ultimately, talk about those patients that you see, or in whom you may suspect thoracic endometriosis.
[Dr. Shanti Mohling]
…When I am meeting with someone, and we are pretty sure from their history, from their exam, from their family history, or from prior surgical documentation that they have endometriosis, and they want to have surgery and they want to have either just excision or they want to have excision with hysterectomy, very rarely, but occasionally, also oophorectomy, especially if they're over 50 and have involvement of the ovaries, I'm going to say, "Listen, some of my patients have diaphragmatic disease."
We have a conversation. "One, do you have symptoms? Do you have chest pain? Do you have shoulder pain? Do you have, or if anyone has a history of catamenial, meaning with the menstrual cycle, pneumothorax, or symptoms?" I'm going to have an increased threshold of interest that they might have diaphragmatic or thoracic disease…
…
[Dr. Shanti Mohling]
When I was a resident in the '90s, he was one of my attendings in Denver Health. He was fabulous and really insisted that we all learn gynecologic ultrasound. We also had one of the premier OBGYN maternal-fetal medicine docs who had written books on OB ultrasound, who also trained us. I benefited from that, and since then have done my own ultrasounds that I've built on that in my own training with conferences and how you evaluate for adenomyosis, for example. Then augmenting that, you can use, of course, the slide test, which you're familiar with, where you press on the belly or you move the probe and you see how the structures move with each other.
That helps a lot to identify adhesions. I am discovering now that I do my pelvic exam before the ultrasound, of course. Just that's the sequence. Because of that, I know where that intense nodular disease will be. I'm seeing that, I'm finding that I can actually see it with my ultrasound probe. I can't tell you that I would be able to do that had I not also done an exam, that refinement of that, like uterosacral thickening, I don't know that I quite have that skill set, but I'm building it. Of course, I've already felt it with my fingers, so then I'm developing that.
…
[Dr. Shanti Mohling]
When I say when I go and look, I mean every single patient who I operate on for endometriosis at the beginning…
I do most of my surgery robotically. Before I dock, I put them in reverse Trendelenburg, maybe 15 degrees, and I look at the whole upper abdomen. I elevate the liver, look under the liver on the right. I look at the surface of the kidney. Of course, the gallbladder, if it's there, I'm going to be visualizing it. Then I mobilize just using my suction irrigator. I just press on the liver louder, pushing it medially, pushing it down, taking my 30-degree camera all the way up so I can see the whole right dome of the diaphragm. Then I do the same on the left. Of course, sometimes you find a little pericardial disease too, and that's a whole nother threshold of conversation ahead of time.
…
[Dr. Shanti Mohling]
I think that one thing that's very important to clarify is that one of the symptoms we talk about is catamenial pneumothorax. Really, that is more a pulmonary pleura disease, more than a diaphragmatic disease. You can have diaphragmatic disease and even full thickness and never have a pneumothorax if you don't have pulmonary disease. If sometimes when someone has really significant symptoms, I will have them go ahead and consult with who we use, which is a guy, a doctor named Jeff Watkins, and they'll have a consultation.
He's then available for VATS. It's very, very rare in the literature to have disease above the diaphragm with no documented disease visualized below the diaphragm. Some patients have significant enough symptoms that they want the VATS. They want to have it confirmed that it's not seen there. Of course, 90% of the lesions are going to be on the right. That's how we'll set it up, and that will be the approach if we're going to do VATS.
[Dr. Mark Hoffman]
How many of those are you doing in a year? Is that a pretty common part of your practice?
[Dr. Shanti Mohling]
I would say that it comes up maybe once a month on average.
[Dr. Mark Hoffman]
Wow, that's a lot.
[Dr. Shanti Mohling]
It is. It comes in clusters. There might be months where I don't see it. Then, of course, Nic also. We have a probably similar average on that.
Multidisciplinary Challenges in the Detection of Thoracic Endometriosis
Clinician expertise and intuition play a critical role in diagnosing thoracic endometriosis, as relying solely on traditional diagnostic methods can lead to undetected or mismanaged cases. In Dr. Mohling’s experience, negative MRI results do not preclude the presence of significant bowel disease, which can become evident during laparoscopic evaluation. Dr. Mohling therefore advises clinicians to remain attuned to clinical symptoms and consider multidisciplinary collaboration for comprehensive patient management.
Additionally, Dr. Mohling explains how cardiothoracic surgeons often overlook underlying diaphragmatic endometriosis when treating patients presenting with catamenial pneumothorax, leading to complications such as talcomas and recurrent pneumothorax. According to Mohling, this situation underscores the importance of multidisciplinary communication and collaboration to improve diagnostic accuracy and patient outcomes in cases of advanced endometriosis.
[Dr. Shanti Mohling]
I would say that some of the times, even if I've had an MRI that was negative for invasive bowel disease, I've been able to see the bowel so plastered on the uterus that you see this almost rickrack where it's fused. When I'm there laparoscopically, and indeed, the bowel is entirely fused and we have to do a resection, it plays out. I'm learning also to trust my own ultrasound skills because these aren't the things I was learning 20 years ago. Some of them are things I'm learning as I go.
[Dr. Mark Hoffman]
Yes. It's putting it all together. It's, if they're having bowel symptoms associated with their cycles, you get very suspicious exam findings. We have great MRI radiologists here where I work, but again, being able to match the clinical findings and the history with what you're seeing, it doesn't always correlate with what they see versus what you see. Having that little voice in your head, go, "I know the MRI is negative, but man, this feels like there's going to be something else there," and involving your colorectal colleagues. If they're always next door, it's not as big a deal, but things like bowel prep, and those are the things that you can do to anticipate those surgeries and making sure your colorectal colleagues are available as opposed to, oh man, we're just finding out, and more importantly, counseling the patients.
[Dr. Shanti Mohling]
Absolutely. I find that more and more, I'm doing bowel preps ahead of time just because I've been surprised. Even when I think, oh, they may not have it, I just more and more, any small trigger that makes me think maybe bowel, I'm going ahead and having them do a bowel prep so I'm ready.
[Dr. Mark Hoffman]
No, I think I've gotten to that point to a degree as well. I don't know, there's just something seems a little bit more than I'm thinking, and more and more, maybe it's just the blink thing. If you've read Malcolm Gladwell, there's just something about this picture that just seems suspicious to me, and understanding what that gut feeling is and go, "Okay, I'm not going to ignore that little voice in my head, and I'm going to be more prepared." Those are the things you learn after years of experience, good and bad, that allow you to hopefully have a better experience in the OR as you get further along in your career.
…
[Dr. Shanti Mohling]
Remember that if you've got advanced endo, you're going to have about up to 12% chance of having diaphragmatic disease. I see a lot of patients with Stage 4 endo.
[Dr. Mark Hoffman]
What percent of those are going to have pulmonary disease though that are going to have–
[Dr. Shanti Mohling]
Much lower. This brings up a really, really important issue, Mark. I think it's one of my, how am I going to get this issue out there? That is that …patients who have pneumothorax, they don't get seen by us. They get seen in the ER. Then they get shuttled to pulmonary medicine and cardiothoracic surgeons who do pleurodesis. What happens is, then you can never get to their diaphragmatic disease. I have a patient who has had a couple of pleurodeses, and she has still recurrent pneumothorax. We did VATS, the lower part of her diaphragm, you can see where it was stapled from above so you can't see any disease.
Then if you go in on VATS, it's just scarred completely from the pleurodesis. You can't just go cutting blindly into the lung, and you can't access the disease anymore. Another person I just spoke with has something called talcomas from the talc from pleurodesis, creating these granulomatous lesions throughout the lung. We have this really complex problem where cardiothoracic surgeons are treating pneumothorax, which is catamenial, which is endometriosis in etiology, and they're treating them with pleurodesis without removing the disease.
Then they still have the symptoms of endometriosis and then they have this completely scarred pulmonary cavity. It creates an untenable situation that we cannot really address any longer. Maybe they are somewhat successful. In the literature, sometimes they're doing pleurodesis, and then they're adding GnRH analogs temporarily, and they get relief. Then how long can you do that? Not forever. I think one of my goals in the next few years is to figure out a way to somehow open the door for conversation with cardiopulmonary providers so that we can share that, the care of those patients.
Podcast Contributors
Dr. Shanti Mohling
Dr. Shanti Mohling is a gynecologic surgeon in Portland, Oregon.
Dr. Mark Hoffman
Dr. Mark Hoffman is a minimally invasive gynecologic surgeon at the University of Kentucky.
Cite This Podcast
BackTable, LLC (Producer). (2024, September 17). Ep. 65 – Thoracic Endometriosis: Beyond the Pelvis in Diagnosis [Audio podcast]. Retrieved from https://www.backtable.com
Disclaimer: The Materials available on BackTable.com are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable.
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