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BackTable / OBGYN / Article
Endometriosis Signs & Symptoms: How to Identify Endometriosis
Dana Schmitz • Updated Aug 29, 2023 • 38 hits
Endometriosis diagnosis requires a combination of patient history and modern diagnostic tools. Notably, despite technological advancements, the age at symptom onset and gravidity/parity details remain central to diagnosis, underscoring the importance of detailed history-taking. C-section histories can serve as a red flag for abdominal wall endometriosis, while specific symptoms, like pain during sit-ups, might hint at overlooked subfascial endometriosis, best visualized via MRI. The symptom evolution, notably the resurgence of pain after discontinuation of birth control pills and the presence of lateralized pelvic pain, offers vital diagnostic cues. While routine OBGYN ultrasounds might not always spot early endometriosis, suspected endometrioma necessitates an MRI, demanding close collaboration with skilled radiologists to ensure nuanced interpretation of these detailed scans.
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
• Endometriosis often starts with painful periods during menarche and may become suppressed with birth control pills. Discontinuation of birth control pills, however, often sees a return and exacerbation of symptoms, a strong indicator of endometriosis.
• The 3 D's to consider during a clinical exam: dysmenorrhea, dyspareunia, and dyschezia. Dysmenorrhea is the most common symptom.
• Most OBGYN ultrasounds are not sensitive enough to detect earlier stages of endometriosis, therefore a thorough patient history and clinical exam are crucial.
• An MRI should be ordered for patients with suspected endometrioma and for patients with palpable nodularities upon exam.
• Patients specifying lateralized right or left pelvic pain during their period can be a major sign of endometriosis.
• Thorough abdominal wall inspection is important for patients with a history of C-sections, as abdominal wall endometriosis may not be near the incision scar and is oftentimes missed.
Table of Contents
(1) The Role of Patient History in Identifying Endometriosis
(2) Recognizing the Signs & Symptoms of Endometriosis
(3) Imaging for Endometriosis: From Ultrasound to MRI
The Role of Patient History in Identifying Endometriosis
Patient history plays a foundational role in diagnosing endometriosis, highlighting that technology hasn't diminished its significance despite advances. Key indicators such as the age at which symptoms begin and the patient's gravidity and parity, especially when indicating unexplained infertility, are pivotal. A history of C-sections can sometimes point towards abdominal wall endometriosis, which might not even be near the scar. Another often-overlooked manifestation is subfascial endometriosis, linked to specific symptoms like pain during coughing or sit-ups, best identified through MRI. While dysmenorrhea is almost universally present in endometriosis patients, dyspareunia and dyschezia are less consistent but still valuable pointers.
[Dr. Mark Hoffman]
To begin your workup, now, we can start in clinic, but a lot of folks will have surveys and stuff they send out. Are you guys sending out packets or surveys to patients prior to them coming to clinic? Does the workup begin when they come into your office?
[Dr. Ted Lee]
Yes. I think the problem with surveys, sounds great, the problem is that nobody look at it a lot of times.
[Dr. Mark Hoffman]
No, I think that's very true.
[Dr. Ted Lee]
I think you need to have resources to have like a nurse practitioner or PA to screen or somebody to screen those surveys. I think it could be incredibly helpful. Unfortunately, most people just don't have the time to go through the surveys. I think ideally you really could use the survey, but ideally, most people don't.
[Dr. Mark Hoffman]
It starts with an H&P for you. It starts with-
[Dr. Ted Lee]
Yes, exactly.
[Dr. Mark Hoffman]
-just get a thorough history. I think that's something about what we do that is extremely valuable. Like you said, I think it's the first thing we learned as med students. I don't think it's gotten less important even with all the technology that we have. In your history, what are the types of things you're asking that maybe not everybody is asking? Obviously, Gs and Ps and other health history, but what are the things you're looking for in patients in whom you suspect endometriosis?
[Dr. Ted Lee]
Obviously, the age is extremely important. If you have patient coming at age 50 and have pelvic pain for the first time, you're not going to think endometriosis. Age, when the patient present it to you. Obviously, they can tell you, older patient in their 40s, they will tell me, "I have severe pain with my period since my teenage years." Those patients, even though they present late, they can still have endometriosis because they understand the symptoms was many, many, many years ago. I think gravidity parity, it's important too, because a lot of times, for example, if you are doing hysterectomy for fibroid and the patient G0, P0, it should not be assumed that just the way it is because most people are going to be pregnant unless they purposely try to avoid pregnancies.
If they come in G0, P0, you have to ask, "You just don't want to have kids, or you have you tried using birth control?" If they tell you, "I just never used birth control, and I never got pregnant," that should be a red flag.
[Dr. Mark Hoffman]
That's a good one. Yes, that's interesting.
[Dr. Ted Lee]
Yes. It's something that you need to keep at the back of your mind. In terms of the Gs and Ps, I think C-sections, vaginal delivery, and stuff like that, it's important, especially with C-sections. A lot of patients with C-section end up with endometriosis. The other thing that can happen with C-section is abdominal wall endometriosis.
[Dr. Mark Hoffman]
I see a lot of that. I think my threshold to think about that's pretty low if they're having pain at the scar apices, and it gets missed a lot.
[Dr. Ted Lee]
A lot of times abdominal endometriosis, actually, are not even near the C-section scar. Sometimes they could be maybe a few inches or even removed from the actual C-section scar. Then the ones that usually get missed a lot, the subcutaneous ones that people can pick up because sometimes you'll feel that in patients, the one that gets missed a lot is rectus muscle endometriosis.
[Dr. Mark Hoffman]
Subfascial.
[Dr. Ted Lee]
Subfascial endometriosis, right?
[Dr. Mark Hoffman]
Yes.
[Dr. Ted Lee]
Those you don't feel a lump. Top of the area, they would have tenderness there, but it don't actually feel a lot because it's the fascial. In those patient, they'll frequently tell you the symptoms of pain with coughing, pain doing situps, that's worse with their period, stuff like that. In those patients, I would just order MRI, and a lot of times they would show up with the rectus muscle endometriosis.
[Dr. Mark Hoffman]
Yes. I want go through your imaging modalities to work up here in just a minute because I think there's a lot of variability, but I have a pretty low threshold for that as well.
[Dr. Ted Lee]
In history, I think your typical things are 3Ds; dysmenorrhea, dyspareunia, dyschezia. Very, very typical symptoms that you ask. I think if patients does not have dysmenorrhea, and stopped having menses, then I think dysmenorrhea is the most common, the most basic symptoms of endometriosis unless they have become amenorrhea for different reasons. They're on some kind of hormonal medication make them amenorrhea. Most patient with endometriosis, like I said, almost all of them have dysmenorrhea. Dyspareunia and dyschezia are much more-- What do they call it? It's, a patient can go without it.
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Recognizing the Signs & Symptoms of Endometriosis
Endometriosis frequently presents with an evolving symptom profile. Often starting as painful periods during menarche, many young patients find symptom relief with birth control pills. However, a notable pattern emerges when they discontinue these pills—symptoms often return, oftentimes exacerbated. This recurrence is a significant indicator of underlying endometriosis. Recognizing lateralized pain is very important in a diagnostic workup, wherein patients experience pain specifically on one side of the pelvis during their period. Such lateralized symptoms, rather than generalized pelvic pain, can be highly indicative of endometriosis. The challenge of diagnosing this condition remains twofold: the overlap with other conditions and the current necessity for a surgical diagnosis, emphasizing the need for clinicians to be astute and consider the whole clinical picture.
[Dr. Mark Hoffman]
I tend to think, and I don't know that I have the evidence at the tip of my tongue to support it, but I think about endometriosis in terms of progression. Like you said, starting off when they started having periods, a lot of times they had painful periods with menarche, or shortly thereafter, they got put on birth control pills, whether it's because they were becoming sexually active, or because their doctor said, "Ah, you're having painful periods. Let's see if we can't improve that." They do better for a number of years, and then sometime in their 20s, they're like, "I'm tired of being on birth control pills." Or they're taken off birth control pills because they're going to try to start a family and all the symptoms return.
That to me is like a telltale sign. Like, okay, when you were being treated, symptoms went away, and then it got a whole lot worse. The longer they're off treatment, the worse it gets and the more difficult it is to put them back on hormonal suppression to treat it. That's oftentimes when they get put back on, they fail, that's when they get sent to me. Yes, I agree. I feel like it starts cyclic, all the other stuff down the road, the daily pelvic pain worse throughout the day with activity, the musculoskeletal component, IC, IBS, kind of the three-headed monster with endometriosis, that seems to be a later progression. Do you feel like that's what you're seeing as well in your patients?
[Dr. Ted Lee]
Yes, I think so. I think a lot of times, initially, the pain may be just during their periods, and over time, they would have pain also in their periods and typically still worse with period. Usually, worse also during this cycle too. That's a very common report.
[Dr. Mark Hoffman]
Ovulation pain.
[Dr. Ted Lee]
Exactly, yes. Also, one of the things, and I tell other people, is that I say if patient have lateralized pain during their period, that is a very important piece of history because that--
[Dr. Mark Hoffman]
Explain what you mean by that lateralized pain. Like it radiates?
[Dr. Ted Lee]
No, if they say, "I have right-sided pain during my period," or, "I have left-side pain during my period."
[Dr. Mark Hoffman]
Oh, specific. I got you.
[Dr. Ted Lee]
Yes. Not just pelvic pain. If they can say, "I have right-side pain or left-sided pain," of course, a lot of patient with endometriosis have midline pain too, but if they tell you that they have right-side pain or left-sided pain during their period, that is very, very indicative of endometriosis.
[Dr. Mark Hoffman]
You have a patient that you are suspicious of. I use the term in whom a patient with suspected endometriosis or presumed endometriosis because I think we talked a little bit about the delay in diagnosis. I think part of that is undoubtedly, we got to believe women, we got to believe patients. It's chronic pelvic pain. It's a challenging condition that it can overlap. I do think part of it is also the fact that this is a disease that is diagnosed, at least currently it's a disease that is diagnosed surgically. We'll have patients that I presume have it, or in whom I'm highly suspicious that they have endometriosis.
Imaging for Endometriosis: From Ultrasound to MRI
The majority of Dr. Lee’s endometriosis patients do not undergo further imaging after the primary evaluation, mainly because standard OBGYN ultrasounds may lack sensitivity in detecting initial stages of the condition. The presence of endometrioma substantially increases the risk of severe complications, making an MRI indispensable for thorough examination. In cases where there's palpable nodularity, an MRI becomes a necessity. Collaboration with experienced radiologists is important to accurately interpret the intricate nature of these scans, ensuring that any underlying pathology doesn't go unnoticed.
[Dr. Mark Hoffman]
You have a patient that you suspect disease or maybe in someone you anticipate finding advanced disease. Now, I imagine you are someone who operates on the bowel frequently. I've got a colorectal surgeon, a colleague I work with regularly for patients in whom we suspect bowel involvement. What are additional tests you're ordering? Are all your patients getting ultrasounds? How frequently are you getting MRIs? What's your threshold for referring to colorectal surgery or urology for patients? What are next steps you take from clinic between your initial eval and then the operating room?
[Dr. Ted Lee]
Right. I would say majority of my patient don't end up with any further imaging. By the way, your typical OBGYN ultrasound are very, very insensitive when with diagnosis of endometriosis because most patients are going to have Stage 1, 2 disease, and that's not visible on ultrasound. Then so, usually, if the patients have evidence of endometrioma, the patient have debris-filled cysts, for example, you've taken somebody out to do history for fibroid and you notice that she had the debris-filled cysts on her recent ultrasound, and you look five years back and that debris-filled cyst was there already, guess what that cyst could be?
That could be endometrioma. The worst thing that you want to do is going to do you think a simple fibroid history for endometriosis and you go in there and you have frozen pelvis. Presence of endometrioma is basically a factor, basically increase the risk of obliteration of cul-de-sac for some pelvis and bowel invasions by as much as five times based on some of the earliest study by Ray White. If I had a patient who had endometrioma, I would order MRI because my finger can only reach up so far on my exams. If their nodularity is beyond the reach of my finger, I would miss it. Those patients with endometrioma, I would definitely order MRI.
[Dr. Mark Hoffman]
You said you're not getting ultrasound though on most patients or you are?
[Dr. Ted Lee]
No, most patient already have ultrasound by the time they come to see me. Then most of them would say, "No more ultrasound." Right?
[Dr. Mark Hoffman]
Right.
[Dr. Ted Lee]
Obviously, if they come in with the [unintelligible] or suspicious for endometrioma, regardless of my exams, those patients get a MRI just because the risk of having severe disease is so high.
[Dr. Mark Hoffman]
I order quite a few MRIs at a lot of them. We've got to a radiologist who we work with closely here as well who-- I think it's important to have surgeons who operate on endometriosis a lot. I think having radiology teams that are used to looking at pathology is important. Do you have specific radiologists you work with regularly at UPMC that are reading your scans?
[Dr. Ted Lee]
Sure. The other indication for MRI would be if I feel nodules on exams. Then those patient get an MRI. There are basically two type of people get MRI. Patient with endometrioma or patient with nodularities on exams. They get MRIs.
Podcast Contributors
Dr. Ted Lee
Dr. Ted Lee is the director of the Division of Minimally Invasive Gynecologic Surgery at NYU Langone Health and he is chief of surgical innovation for gynecology in NYU Grossman School of Medicine's Department of Obstetrics and Gynevology.
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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