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How to Diagnose Endometriosis: Challenges, Barriers & New Solutions

Author Dana Schmitz covers How to Diagnose Endometriosis: Challenges, Barriers & New Solutions on BackTable OBGYN

Dana Schmitz • Aug 24, 2023 • 34 hits

Dr. Ted Lee, an OBGYN specializing in MIGS, explains how to diagnose endometriosis, a condition often mired in years of misdiagnosis. Dr. Lee brings to light the complex interplay of patient perceptions, medical biases, and technological advancements. Preconceptions surrounding pelvic pain can inhibit a timely and accurate diagnosis. There is also a concerning trend of misdiagnosing endometriosis with conditions such as interstitial cystitis or irritable bowel syndrome. The diagnostic landscape sees promise with innovative solutions like the micro RNA technology, a saliva-based test with impressive precision, which could eliminate common barriers in diagnosing endometriosis.

This article features excerpts from the BackTable OBGYN Podcast. We’ve provided the highlight reel in this article, but you can listen to the full podcast below.

The BackTable OBGYN Brief

• Patients with endometriosis often face a years-long diagnostic delay. Conditions like interstitial cystitis, irritable bowel syndrome, and chronic pelvic pain are often mistakenly diagnosed before identifying endometriosis.

• During a pelvic exam, key areas to check include the cul-de-sac and uterosacral ligament; genuine discomfort in these areas can offer insights into the potential presence of endometriosis.

• Physician uncertainty about the efficacy of surgery as a diagnostic tool for endometriosis, a lack of confidence in history-taking and pelvic exam skills, and a pre-existing bias about pelvic pain all act as barriers to an accurate diagnosis.

• A CO125 test may be elevated, sometimes to high levels, in endometriosis. An OBGYN ordering the test should hesitate to automatically refer to oncology, as patients may have elevated levels due to endometriosis but experience an unnecessary oophorectomy. Alternate testing methods are preferred.

• A new saliva test based on micro RNA technology, developed in France, may achieve nearly 97% sensitivity and almost 100% specificity for diagnosing endometriosis. Caution should be used with highly sensitive tests once available, as incidental findings might wrongly attribute a patient's pain to endometriosis.

How to Diagnose Endometriosis: Challenges, Barriers & New Solutions

Table of Contents

(1) Endometriosis Diagnosis: Challenges & Misconceptions

(2) Barriers to Endometriosis Diagnosis

(3) The Future of Endometriosis Diagnosis: Pros & Cons of Advanced Testing

Endometriosis Diagnosis: Challenges & Misconceptions

Endometriosis, despite its prevalence, remains one of the most elusive conditions to diagnose, often taking seven to eight years before patients receive a definitive diagnosis. Dr. Ted Lee underscores the challenge posed by the entrenched stigma around pelvic pain, leading many clinicians to form prejudiced views before even initiating an examination. This bias can create obstacles for patients, prolonging their journey towards an accurate diagnosis. Dr. Lee stresses that with experience and the right tools, like the use of smart text prompts in EHRs such as Epic, clinicians can automate many of the questions to make the diagnostic process more straightforward. Alarmingly, numerous patients have been misdiagnosed with conditions like interstitial cystitis and irritable bowel syndrome before the real culprit—endometriosis—is identified. A clinician's ability to spot authentic, visceral reactions during exams is pivotal in identifying patients they can truly assist.

[Dr. Mark Hoffman]
For all the surgery we could talk with Ted Lee, one of the things that I was surprised that he said he was interested in talking about the ambulatory workup of endometriosis, but it's also, when I talk to our trainees about being a surgeon, I always focus on the clinic workup, the ambulatory workup, the decision for surgery. That's what I think really makes the doctor. I think you can train a lot of people to do procedures, but the decision to go to the OR-- Before we get into the steps you take, what is it about endometriosis that is such a diagnostic challenge? Because it is, right? It's years; seven, eight years before people get diagnosed. What is it about endometriosis that makes diagnosing it so difficult?

[Dr. Ted Lee]
I think it's, there's always the stigma of pelvic pain. I think a lot of people whenever they have busy practice, you have many patients waiting in the waiting room, and then you flip the chart and look at this patient's chart, and you say, "Oh, pelvic pain." Then automatically, a lot of people are just thinking that it's pelvic pain, and this will take a lot of time, and so they already have a built-in prejudice already about the patient. That's one of the obstacles that the patient face, is that the physicians themselves just don't feel comfortable asking questions and taking care of [unintelligible] patients.
In reality is once you have done this long enough, it's, a lot of the questions become very automatic. Nowadays, if you have Epic, you can have basically a smart phrase or smart text, basically, all the prompting questions that I prompt you to ask. You can do that very, very easily. Back in those days, for me, it was just automatic this is what I ask and the answers I get. Once you're comfortable with the history part of the whole encounter, it's pretty straightforward, and everything is practiced. If you do enough, then it won't take us long.

[Dr. Mark Hoffman]
My guess is most of the patients or many of the patients that you're seeing are patients that have already been diagnosed with endometriosis, and then they get referred to you. Is that true, or are you getting a lot of patients that are just coming in with pelvic pain, or--

[Dr. Ted Lee]
I have patients who has been seeing so many doctors already and who hasn't been diagnosed. Recently, I was shown a video of a patient of mine that was doing-- Basically, the video was recorded so one of the PhD students can convince the people who give out grants to give her the grants for AI diagnostics for endometriosis. There was a project that Nicole Donnellan, one of my associate, was working on with the PhD student. This was obviously after they recorded and they show it to me, and it turns out the mentor for the PhD student turned out to be the husband of this patient.

[Dr. Mark Hoffman]
Oh, wow.

[Dr. Ted Lee]
I was like, "How did Dr. Donnellan know about my patient?" It was kind of strange. Anyhow, they showed me the videos, and it was this patient who I met for the first time in her late 40s. She'd been having pelvic pain for many years and had four rounds of IVF all fail. I examined her and look at her ultrasound, and I say, "You have Stage 4 endometriosis." She has tethering and nodularities on exam. Then when I heard about the IVF that she did, the full IVF she did that fail, I feel really bad. I said, "I wish I had met you earlier." Not all my patient were diagnosed. Actually, a lot of patients are not diagnosed with endometriosis.

They've been diagnosed with many different things. They have been diagnosed with interstitial cystitis, they have diagnosed with irritable bowel syndrome, everything else, but endometriosis.

[Dr. Mark Hoffman]
For those of us that do it, those are red flags, right? Those; IBS, IC, chronic pelvic pain.

[Dr. Ted Lee]
Yes.

[Dr. Mark Hoffman]
It just jumps to the top of our list because I think we see it a lot. I guess when you're not doing this a lot, it's not something maybe that's high enough on your differential.

[Dr. Ted Lee]
A lot of our patients are given diagnosis they don't have, a lot of times. I have patient who supposedly used to have interstitial cystitis and a palpated anterior vaginal wall. She's even tender there. Typically, a patient with interstitial cystitis, you palpate anterior vaginal wall, do a compression, they would've severe pain, but a lot of those patients don't have those kind of exams. There are a lot of patient being diagnosed with all kind of problems, palpated spasms, IC, irritable bowel. I do exam and I touch their cul-de-sac and uterosacral ligament, and they jump off the table.

That's the kind of exam that they have instantaneous reaction to the exam. What I call is very like a visceral reaction to the exam, a classic visceral reaction. That's how I term it, how I describe it.

[Dr. Mark Hoffman]
Yes, you can see it in their face.

[Dr. Ted Lee]
It's something that they cannot fake. It's just what I call very authentic exam. Those are the type of patients I know I can help.

Listen to the Full Podcast

Ambulatory Workup of Endometriosis Patients with Dr. Ted Lee on the BackTable OBGYN Podcast)
Ep 30 Ambulatory Workup of Endometriosis Patients with Dr. Ted Lee
00:00 / 01:04

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Barriers to Endometriosis Diagnosis

Diagnosing endometriosis presents multifaceted challenges that hinge on both patient experiences and physician confidence. The uncertainty surrounding the potential benefits of surgery can deter physicians from considering it as a diagnostic option, especially if they lack the requisite skills or experience. Another overlooked barrier to diagnosis emerges from the patients themselves. Many, unaware of what constitutes a 'normal' menstrual experience, dismiss their severe symptoms as regular, especially if influenced by family or previous medical consultations. Truly listening to patients, trusting their narratives, and dispelling misguided notions about what is "normal" when it comes to menstrual pain are important during a diagnostic workup.

[Dr. Mark Hoffman]
If they're doing well on birth control pills or we find some other non-surgical management that works for them, we don't necessarily have to diagnose, or at least that's how I've been practicing. Are you always starting treatment with hormonal suppression of some kind prior to surgery, or how quick are you to go to the OR?

[Dr. Ted Lee]
I think it depends. Actually, one of the barriers for diagnosis is, frequently, physician are now comfortable of taking patient to the surgery. One of the reason, the barrier is they are not sure if the surgery is going to help or if they're going to find anything. I think one of the ways for me is I'm very confident with my history and the exams that allow me to offer that as surgery as an option to the patient, a lot more frequently than other people. I think if you are not sure of whether the patients is having the choices or you're not even sure if you're going to be able to help the patient surgically, you're less likely to offer that as an option.

[Dr. Mark Hoffman]
Right. Physician comfort in managing a problem is definitely going to push you one way or another in terms of what you're going to recommend.

[Dr. Ted Lee]
Right, exactly. Of course, always do no harm, right? That you don't want to do something that you don't have the training or the skill set to perform and hurt the patient. I totally understand that, but I think one of the barriers is that people, in general, just don't feel comfortable performing surgery. That's one of the reason. Actually, one of the other reason that I think most people don't think about is the patient themself as part of the delay for the diagnosis because they write things off. They think it's normal.

[Dr. Mark Hoffman]
People get busy, people have lives. Yes, they don't know, that's right.

[Dr. Ted Lee]
They think it normal and say, "Oh, yes. I miss work all the time. I miss school whenever I have my period. Then I just thought that was normal." Then I tell them, "No, that's not normal."

[Dr. Mark Hoffman]
Sadly, a lot of patients that I see, their doctor said, "Well, that's just the way it is," or their mom or family or somebody has just told them this is the way it's going to be, or it's supposed to be, and it's sad to hear that. Yes, so listening is a huge part of diagnosis. Trust patients, believe them. When they tell you something is wrong, believe them. They oftentimes have been through many, many things.

The Future of Endometriosis Diagnosis: Pros & Cons of Advanced Testing

A groundbreaking method from a French company leverages micro RNA technology, the same technology used in the development of COVID vaccinations, to diagnose endometriosis with remarkable precision through a simple saliva test. While the test's high sensitivity and specificity could revolutionize diagnosis, it may also lead to overdiagnosis and overtreatment. Such technological advances underscore the importance of judicious application and careful interpretation of test results to ensure patients receive appropriate care.

[Dr. Mark Hoffman]
Right, that's interesting, it's helpful. In the clinic setting, anything else? We're getting close to time here, I know you're a busy guy. Any other imaging studies, lab tests, anything else you're getting in these folks? That's what I think of in terms of my workup, but anything else we're missing that our listeners should think about when evaluating patients for endometriosis?

[Dr. Ted Lee]
Yes, I think a lot of your listeners are general OBGYN in the community. One of the worst thing you could do is order a CO125, and then it's elevated, refers to oncologist. You're guaranteed it's--

[Dr. Mark Hoffman]
It's always going to be mildly elevated with endo, and it's just going to be a--

[Dr. Ted Lee]
Or it can be also pretty high too. What's going to happen is that oncologist is going to remove that patient's ovary, and that's what's going to happen. You are basically-

[Dr. Mark Hoffman]
Interesting.

[Dr. Ted Lee]
-asking the oncologist to remove the ovary when you do that. In the young patients, I don't typically order any tests. Obviously, it can be elevated in the patient with severe endometriosis, but there are a lot of the newer tests that's coming in the horizon.

[Dr. Mark Hoffman]
Yes, so let's talk about the future of diagnosis of endometriosis. It's actually, there's a study in the lay press about a Japanese study, which I'm sure you heard about with the Fusobacterium, I think, was found more commonly in the uterine microbiome in patients that had endometriosis compared to those that don't. Again, very, very early. It's one study, not a huge number of patients, but what do you think the future of endometriosis diagnosis looks like?

[Dr. Ted Lee]
I think it's already here. I don't know if you have heard about it, but there is a company from France using the same technology that was used to discover the COVID vaccinations, the micro RNA. They were able to find a little bit over 100 signature micro RNAs for endometriosis and they're able to achieve close to 97% sensitivity and close to 100% specificity. Basically, a perfect test.

[Dr. Mark Hoffman]
This is just a blood test?

[Dr. Ted Lee]
No, saliva.

[Dr. Mark Hoffman]
Oh, come on. Really?

[Dr. Ted Lee]
Yes.

[Dr. Mark Hoffman]
Is this to market in Europe or this is early?

[Dr. Ted Lee]
I think they are pretty far. I first heard about this when I attended the ESG in Lisbon last October.

[Dr. Mark Hoffman]
Oh, so a while back, like eight months ago, not a while, not years, but within the last 12 months?

[Dr. Ted Lee]
Yes. You can google it you'll find those studies.

[Dr. Mark Hoffman]
Yes.

[Dr. Ted Lee]
It's pretty amazing. The problem with that, I actually was playing around with ChatGPT the other day, and I asked what would be the pitfall of extremely sensitive and accurate diagnostic tests for endometriosis, and ChatGPT gave me incredible answers.

[Dr. Mark Hoffman]
Better than any student, resident, fellow, or faculty member, probably.

[Dr. Ted Lee]
Yes.

[Dr. Mark Hoffman]
What did ChatGPT have to say?

[Dr. Ted Lee]
ChatGPT says that you're going to have a lot of patients who are overdiagnosed and over-treated.

[Dr. Mark Hoffman]
Because you're going to have asymptomatic patients that are going to have it, right?

[Dr. Ted Lee]
Yes. For example, we all know we have patients who have incidental endometriosis, very small superficial endometriosis. You're not even sure if that's the reason for their pain, but you excise it and you diagnose it. Sometimes the endometriosis can be incidental, have nothing to do with the patient's pain, but it's very hard to persuade a patient that the endometriosis may not be the reason for their pain because they have a diagnosis and nobody give any reason for their pain for the past 10 years. Now they say, "Oh, I have biopsy-proven endometriosis," even though it was just a little bit.

[Dr. Mark Hoffman]
Or mRNA-diagnosed endometriosis, not even biopsy-proven, yes.

[Dr. Ted Lee]
Exactly, because it's so, so accurate. Now you're going to have this easy test of saliva, and then you have all the patients diagnosed with endometriosis, and they all think that the reason for their pain is endometriosis. What you do with the information is going to also be the challenge, and the ChatGPT predicted that, by the way. I asked the questions.

[Dr. Mark Hoffman]
That's amazing.

[Dr. Ted Lee]
Access. ChatGPT talking about access too because the test may be very expensive. If you don't have money, you don't have the right insurance, you may not be diagnosed. There could be some inequities.

[Dr. Mark Hoffman]
Unnecessary surgeries for diagnosis.

[Dr. Ted Lee]
Unnecessary surgeries. Over-surgery, over-treatment, or over-medications, right?

[Dr. Mark Hoffman]
Over-medicated, that's right.

[Dr. Ted Lee]
Even though you have the most perfect test, it creates new problems.

[Dr. Mark Hoffman]
Be careful what you look for, yes, [crosstalk]

[Dr. Ted Lee]
Be careful what you wish for, right, exactly.

[Dr. Mark Hoffman]
Be careful what you look for because you just might find it and then now what do we do with that information? Okay, we have this thing. You know what I mean? You can worry about it forever or we can expose you to a new risk from a different intervention. Yes, it's exciting. I think there is more interest in endometriosis than there's been in our lifetime. A lot of that has to do with you both in your work as president of AAGL and your video work, and your work with-- We didn't even talk about your work with the health economics stuff with the ICD-9 codes and all those things. Your contribution to medicine, to women's health, to endometriosis is massive, Ted.

[Dr. Ted Lee]
Oh, thank you. You're too kind.

[Dr. Mark Hoffman]
It's, you make a lot of us feel like we're not doing anything compared to how much you've contributed, but it is great to call you a colleague and a friend, and a mentor or someone who I look up to very much. All your fellows you've trained, you put out unbelievably well-trained fellows and you've really done an amazing job in your career. Not that you're done, but just to see what you've done so far is incredible. It means a great deal that you've taken the time to join us on The BackTable. We'll definitely have to have you back on at some point to really get down to the nitty-gritty in the operating room and the surgical side of all this stuff.

Podcast Contributors

Dr. Ted Lee discusses Ambulatory Workup of Endometriosis Patients on the BackTable 30 Podcast

Dr. Ted Lee

Dr. Ted Lee is a clinical professor and director of minimally invasive gynecologic surgery at Magee Womens Hospital of UPMC in Pittsburgh, Pennsylvania.

Dr. Mark Hoffman discusses Ambulatory Workup of Endometriosis Patients on the BackTable 30 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, August 17). Ep. 30 – Ambulatory Workup of 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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