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Endometriosis Unraveled: Defining, Diagnosing & Treating

Author Taylor Spurgeon-Hess covers Endometriosis Unraveled: Defining, Diagnosing & Treating on BackTable OBGYN

Taylor Spurgeon-Hess • Aug 31, 2023 • 32 hits

Endometriosis, known for its complex manifestations and elusive phenotypes, stands as an intricate challenge, requiring an overhaul of conventional perceptions. The spectrum of its presentation, ranging from superficial appearance to significant fibrosis and scarring, demands a reevaluation of current guidelines based on sometimes imperfect research. Challenges extend to surgical treatments, which may be likened to outdated cancer therapies. Diagnosis has its complexities as well, with current theories failing to encompass all scenarios, urging exploration of genetic and autoimmune factors. Tailoring treatment, considering each patient's distinct symptoms and employing advanced imaging techniques, emphasizes the need for an ongoing, individualized care approach that includes the monitoring of co-existing conditions like IBS and interstitial cystitis.

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

• Endometriosis is characterized by a broad range of manifestations and phenotypes, making it a complex disorder that leads to significant daily and chronic disability in patients. The current understanding of endometriosis, including definitions, guidelines, and treatment plans, often relies on imperfect and possibly inadequate research and knowledge.

• Patients with endometriosis may experience diverse symptoms, from superficial symptoms with severe pain to significant fibrosis of organs with less pain, illustrating the disease's variability.

• Current theories (e.g., retrograde menstruation) do not fully explain the disease. Emerging research areas include genetic susceptibility, inflammatory cytokines, and autoimmune dysregulation.

• Symptoms vary widely among patients and may lead to a delay in diagnosis. There is a tendency to treat endometriosis as dysmenorrhea, leading to potential mismanagement.

• Current treatment is often focused on managing symptoms rather than diagnosing and treating endometriosis itself. Tailoring treatment to the specific symptoms, imaging findings, and exam results for each patient is essential for individualized care.

• Ultrasound and MRI are instrumental in diagnosing deep endometriosis, providing valuable insights into treatment planning.

• Acknowledging co-existing conditions like pelvic floor dysfunction, vulvodynia, IBS, interstitial cystitis, and musculoskeletal etiologies is crucial for a comprehensive understanding of the patient's condition.

Endometriosis Unraveled: Defining, Diagnosing & Treating

Table of Contents

(1) Defining Endometriosis: Beyond the Textbook

(2) Complexities in Endometriosis Diagnosis

(3) Tailored Treatment: An Individualized Approach to Endometriosis

Defining Endometriosis: Beyond the Textbook

Endometriosis, traditionally defined as the presence of endometrial-like tissue outside the uterus, is far more complex and varied in its manifestations and phenotypes. Current understanding and treatment guidelines are based on research that can be imperfect or inadequate, leading to a lack of comprehensive knowledge. This complexity is highlighted by the wide spectrum of its presentation, from superficial appearance to significant fibrosis and scarring, with varying pain levels. The challenge also extends to surgical treatments like excisions, which some liken to outdated cancer treatments. The collective insights suggest a pressing need to reevaluate and deepen our understanding of endometriosis, aiming for more precise definitions, improved research, and more effective treatments.

[Dr. Mark Hoffman]
No, and we've touched on those topics a little bit in prior shows and we could probably make an entire show just about tailoring one's career and trimming and all the things that we don't talk about when you do a fellowship and how different it can look. Maybe for another episode. What I really wanted to spend time, I know because your time is so valuable. What I really wanted to hear from you today was about endometriosis, which is a disease that as a mixed surgeon I see a lot. I think many of us feel that we're inadequately treating patients or that we just don't have enough whether it's knowledge or tools in the toolbox or probably all the above. Let's start from the very basics though. From what-- what do we know about endometriosis, what causes it, how can it present? Then we'll get into some treatments. I know we have a lot of stuff to talk about.

[Dr. Isabel Green]
I think you've acknowledged one of the challenges with even describing and characterizing endo, which is that what we know of it is based on not the most incredible research, not the most in-depth studies and understanding. Whenever we start to define something, I think it's good to acknowledge the limitations in the information that is going into these definitions and into these guidelines and into these treatment plans is based on not perfect and definitely not perfect but also probably inadequate research and knowledge. It's almost like when you're doing a meta-analysis. The data in will determine the data out. Good data yields good data. I just think that's important to acknowledge from the beginning. Then when I think about defining endo, I think about that multiple choice question answer from med school. What is endometriosis? Endometriosis is a disease characterized by endometrium-like tissue outside of the uterus. You'd circle B and you'd get that answer correct and you'd move on. There's so much more and I think even us thinking about how we talk about it or even how we define it, would better serve our patients and even ourselves in terms of the complexity. I think about endo as a complex disorder of varying manifestations and phenotypes that can lead to significant daily and chronic disability in our patients. That to me is a more accurate definition of endometriosis than we would've seen back in med school.

I think that's a good starting point because one of the things that probably frustrates you and I'm sure has frustrated a lot of us is that lack of knowledge and that variability. Just the severe variability of the disease, which we can talk about. One person will have superficial endometriosis and very severe pain symptoms. Someone else might have very significant fibrosis of the organs and scarring of the organs and less pain. That's just one of the ways that it varies. It's definitely more than just endometrial like tissue outside of the uterus.

[Dr. Mark Hoffman]
That's something that the more I do this, the more I feel like we don't know. Thorough history, thorough exam, oftentimes these patients have had numerous surgeries and whatever excision means to that surgeon versus whatever excision means to a different surgeon. This idea of complete peritonectomy which obviously is not a complete peritonectomy. This is a disease that's functioning and working at the microscopic level and we're looking at this thing chipping away at times, like they chipped away at cancer 70 or 80 years ago. There's a role for excision and I want to talk about that a little bit later, but man, it feels like we're just a little bit in the dark here.

Listen to the Full Podcast

Persistent Pain in Endometriosis Patients with Dr. Isabel Green on the BackTable OBGYN Podcast)
Ep 26 Persistent Pain in Endometriosis Patients with Dr. Isabel Green
00:00 / 01:04

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Complexities in Endometriosis Diagnosis

Endometriosis presents an intricate challenge in the medical community due to its complex nature and elusive pathophysiology. Current theories, such as retrograde menstruation, fail to cover all manifestations, driving interest in emerging research areas like genetic susceptibility, inflammatory cytokines, and autoimmune dysregulation. The diagnosis of endometriosis can be a protracted journey, often taking up to 12 years, as symptoms vary widely and may be mismanaged or misdiagnosed as mere dysmenorrhea. Delay in accurate diagnosis may be linked to a broader issue of medical culture that may normalize symptoms, causing women to endure long years of undiagnosed pain. This complexity underscores an urgent need for a more holistic understanding, precise diagnostics, and tailored therapy for this perplexing disease, emphasizing the necessity for collaboration in exploring biomarkers and new diagnostics.

[Dr. Mark Hoffman]
To Amy's point, what's the latest understanding for the pathophysiology of endometriosis? Because the whole, whatever the theory is, like you mentioned we learned in third year of med school, you know when you have a patient that's got Mayer-Rokitansky so doesn't have a uterus or vagina and has endo, well that's not retrograde menstruation, but those patients can have endometriosis. None of those things individually seem to fit to explain all of it. Can you educate us on what is the latest or best theory about where endometriosis comes from, how it proliferates, how it causes pain?

[Dr. Isabel Green]
Yes, I wish I had a really good answer for that. Thanks for that [laughs] difficult question, but it's funny because we keep saying it is that it's probably different in different people. When we look at the studies of retrograde menstruation, that doesn't make sense for people that don't have retrograde menstruation and doesn't make sense for the 80% of people that probably have that every month but then don't end up with endometriosis.

There's some great work and if we can keep developing these pathophysiologic mechanisms, then that will hopefully lead to better diagnostics, better therapeutics, but some interesting work in genetic susceptibility, which is probably a small percent differences and dysregulation that happens, so with inflammatory cytokines autoimmune dysregulation, and these are all really broad general ideas. I think you could bring a basic scientist on to talk about which cytokine and which different specific biomarker. It's good and exciting to see that that is an area of research right now, so looking at changes in the immune system, looking at changes in angiogenesis, the development of-- it's almost like it's cells that are converting and acting like malignancy without a malignancy.

There's so much, I think, there to learn and I feel like when I am reading the manuscripts and the papers, I am barely touching the surface, so it's almost like I depend on our basic science colleagues and the people that are doing the research to look at which biomarkers could be useful. I think that's incredible. I can't answer the specifics of it, but just it's complex.

[Dr. Mark Hoffman]
That's the most, I think, challenging part for those of us that do this is you never want to tell a patient, "I don't know," but I do it all the time. I just say, "We don't know where it comes from chronic pelvic inflammation," so are the changes that are coming to the nervous system or the soft tissue and the fibrosis, is that coming from the endometriosis? What's causing what? It's hard to understand any of it when we don't know the pathophysiology, we don't know where it begins.

I think that's something that, it'll be an exciting day for me. Hopefully, it won't be too long before we start to understand better where this is coming from. Knowing that this is a mysterious disease, one that presents oftentimes early, but is diagnosed late, why do you think that delay comes? Is it just simply we manage patients medically and they don't actually have the diagnosis for surgery till later? Do you think women aren't being heard? Do you think it's all the things? Why is this such a challenging disease to diagnose?

[Dr. Isabel Green]
Yes, I think you're right in that it's probably a combination of factors and that a lot of our research depended on actual official surgical diagnosis of endo. That's even already thinking about that. Our understanding of this disease are only people that ultimately went to have surgery. That's already this interesting lens in which to understand an illness. The big challenges with endometriosis are the fact that we talked about this earlier, there can be a variety of symptoms.

Someone might have very painful periods, not just a bad period, very painful period that leads to missing work, missing school, things like that. Another patient might have pain that exists outside of the cycle, so non-cyclical pain, so daily pain. There can be different manifestations and different levels of the number of days in any month that someone is symptomatic. Probably the irony is that we can be dismissive even when it gets severe to daily, and we can be dismissive and normalize the symptoms when they're cyclic and just monthly.

There's probably a lot of patients that initially get treated for just dysmenorrhea and are treated medically for dysmenorrhea with NSAIDs or a birth control pill and don't really ever get to that diagnosis of endometriosis as the source of that symptom. Dysmenorrhea is a symptom, not necessarily a disease. We know that people can see six to seven visits with their primary care provider before getting a referral to a gynecologist, and it can take up to 12 years, especially for our young patients to get these diagnoses.

I think part of it is that we're very used to treating the symptoms of endometriosis as almost a normal part of the menstrual cycle, and we're just going to treat the dysmenorrhea but not necessarily reach that diagnosis of endo, and then hone in on that as a disease. In a way, it's good that diagnostic laparoscopy isn't necessary anymore to treat endo, you can do empiric treatment, you can have a working diagnosis of endometriosis, but I think a lot of people are stuck in this medical management treatment of dysmenorrhea before getting to endo. They might be on their fourth medical therapy for treatment of dysmenorrhea but not have a diagnosis of endometriosis.

[Dr. Mark Hoffman]
What's your algorithm? If a patient comes to you first time being seen by a gynecologist, has painful periods and I write in my notes a lot presumed endometriosis or suspected endometriosis because, like you said, I feel like we can treat these patients as if they had it without having to have surgery, doesn't mean we're not-- those of us that do it I feel like everybody's got endometriosis, it's just a matter of time until we find it. Again, what do you mean when you say, I guess, should we be finding it sooner?

[Dr. Isabel Green]
Yes. This is a great question. I think even to throw back at you in the sense of if a patient undergoes first-line treatment for dysmenorrhea, that would be medications, so a form of suppression, birth control pill is usually the first line. Then, when we think about pain is a medical failure, does that make that clinician think, well then this couldn't possibly be endo because I have you on a birth control pill and it's not getting better, or does that clinician say you could have endometriosis and you failed the first line of treatment, which is medical therapy.

We're very systems driven which is funny that we talked about that before, Amy, but we're very systems driven in healthcare. The gastroenterologist rules out inflammatory bowel disease and cancer for patient with certain bowel complaints and the gynecologist rules out this. If a patient is having a failure of a medical therapy, one thought is that it can't be endo. You're not having your period and you still have pain but failed medical therapy is also a symptom of endometriosis. Does that make sense? It's like you shouldn't necessarily get to your fourth medication for medical suppression without more than a working diagnosis of dysmenorrhea and endometriosis.

[Dr. Mark Hoffman]
Right. I think for me if a patient's tried something and failed, the medications failed them in that sense, or if it's worth, neither of them tell me whether they have endometriosis or not, if they're taking continuous birth control pills and their symptoms are well controlled, they could have endometriosis, they could not. They could take birth control pills and continue to have pain and they could have endometriosis or they could not have endometriosis. It doesn't help me make a diagnosis at all. [chuckles] That's part of the challenge for me. That's the frustrating thing about this disease, but that's where diagnosis can be helpful in that it allows us to, at least, tell the patient something but outside of the excision part, how often does it change our management to know?

Tailored Treatment: An Individualized Approach to Endometriosis

The conventional approach to treating endometriosis often involves a two-pronged path of medication and surgery. However, this approach may overlook key aspects of individualized patient care. It's essential to recognize each patient's distinct symptoms and challenges, such as dysmenorrhea, dyspareunia, and painful bowel movements, to tailor the treatment. Advanced imaging techniques, including ultrasound and MRI, are crucial in detecting deep endometriosis. A comprehensive approach considers endometriosis as part of a broader spectrum of chronic pelvic pain, with co-existing conditions such as IBS, interstitial cystitis, and musculoskeletal issues. Endometriosis requires viewing as an ongoing process, not a moment in time, mandating vigilant monitoring, and individualized care.

[Dr. Isabel Green]
There's a few steps, I think, that we're skipping, which is making the evaluation of the patient a little bit more individualized and the treatment a little bit more individualized than when we think of classic treatment for endo is medication and surgery medication and surgery. Even as we talk, we're stuck in that. I'll try a medication and then I'll do the surgery. It's I think important for us to think about what we do know because it can be really frustrating to think about all the things we don't know and all the things that don't necessarily work.

When we get back to having that patient in front of us, so what are those person's symptoms? Is it dysmenorrhea? Is it dyspareunia? Is it painful bowel movements? That we can try to get a sense for if they have endo, how multi-site is their pain? Is imaging going to be helpful in terms of ruling out or at least helping guide us to start seeing that deep endo? Ultrasound and MRI have become really helpful, not for superficial endo or not for the salt and pepper endo I call it, but the deep endo and to help us look for comorbidities, things like pelvic floor dysfunction, vulvodynia, things like that.

As we talk about this, I think we can get stuck in the idea that endo is so difficult to treat because all we have is medication and surgery. One of, I think, the most important things is that we actually have a lot of extra tools in our toolkit that we need to engage and employ beyond just the surgery and the medications. Then that exam, that history, needs to help us dictate the timing of surgery, the repetitive need for surgery. I think if we focus on that patient themselves and their exact symptoms, their exact exam findings, their exact imaging, it will be a better way to frame would a medication work, would a surgery work

[Dr. Mark Hoffman]
Combination.

[Dr. Isabel Green]
Yes.

[Dr. Mark Hoffman]
I trained in Michigan, so Suzie As-Sanie a well-known pelvic pain expert, the way I think-- we spent a lot more time in clinic than a lot of our other fellow colleagues. I was like, "Why am I in clinic so much?" The way that we approach, the way that we were taught to approach pelvic pain as this whole spectrum of things, one of the things was endometriosis that was part of that whole chronic pelvic pain spectrum like IBS, irritable bowel syndrome, interstitial cystitis, chronic complex, inflammatory pelvic conditions of unknown cause, musculoskeletal etiologies and looking at all of that, whenever we talk to patients, all of those things are on our minds when we're getting a history, when we're doing an exam.

Like you said, when you take a step back and understand that, yes, all of those things could be there, but oftentimes multiple things are there as you touched upon earlier and taking a more systematic approach but also that long term we're going to-- I can't promise your results but I can promise you effort and we're going to keep working with you and know that this is a marathon, not a sprint.

[Dr. Isabel Green]
Yes. Where we're learning is that it's not one or the other, like you said. It's endo or endo with subsequent central sensitization, endo with severe engagement of the pelvic floor and myofascial pain. There's that whole challenge that comes from the need for earlier diagnosis more specific, treatments targeted hopefully to more superficial disease and things like that. When we get to our patients that we're operating on or we're treating, part of their treatment failures are sometimes our failures to identify these comorbid condition, these secondary processes that patients with endometriosis can have.

We might optimally treat them surgically but we're not optimally treating them and their condition without doing that careful physical exam and history. I like what you said of this longitudinal care because new things may come up. Endometriosis isn't necessarily a moment in time. Comorbid conditions can arise, pain can recur, things like that. This idea that you're in it for the long haul to be able to monitor and see what else comes up as their pain recurs or doesn't recur.

Podcast Contributors

Dr. Isabel Green discusses Persistent Pain in Endometriosis Patients on the BackTable 26 Podcast

Dr. Isabel Green

Dr. Isabel Green is a gynecologist, clinical researcher, and assistant professor with Mayo Clinic in Rochester, Minnesota.

Dr. Amy Park discusses Persistent Pain in Endometriosis Patients on the BackTable 26 Podcast

Dr. Amy Park

Dr. Amy Park is the Section Head of Female Pelvic Medicine & Reconstructive Surgery at the Cleveland Clinic, and a co-host of the BackTable OBGYN Podcast.

Dr. Mark Hoffman discusses Persistent Pain in Endometriosis Patients on the BackTable 26 Podcast

Dr. Mark Hoffman

Dr. Mark Hoffman is a minimally invasive gynecologic surgeon at the University of Kentucky.

Cite This Podcast

BackTable, LLC (Producer). (2023, June 29). Ep. 26 – Persistent Pain in Endometriosis Patients [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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