Endometriosis Foundation of America
Virtual Patient Conference, October 16-18, 2020
Endometriosis Outside the Pelvis - Dan Martin, MD, Michael Nimaroff MD
Tamer Seckin, MD:
Next speakers are again dear supporters of our foundation. Dan Martin is the new scientific director. Dan is a very experienced surgeon and all his life has committed to endometriosis and we are very lucky to have him. He used to be the Divisional Director of Invasive Surgery at the University of Tennessee and Divisional Director of Medical Education at Johns Hopkins Institute. And Michael Lesley Nimaroff is the Head of Hofstra Medical School and North Shore University at Long Island Jewish Medical Center's Minimally Invasive Surgery section. And I welcome you to listen this presentation very carefully. It's about the endometriosis extrapelvic. Thank you.
Diana Falzone:
Welcome to our panel on extrapelvic endometriosis, I'm Diana Falzone and today we're joined by two acclaimed doctors, Dr. Dan Martin and Dr. Michael Nimaroff to discuss this topic that is not as widely known about as it should be. Thank you doctors for joining us.
Dr. Dan Martin:
Thank you. Good to be here with you.
Dr. Michael Nimaroff:
Yes. Thank you very much.
Diana Falzone:
So let's just start at the elementary basics. What exactly is extrapelvic endometriosis? Because many people think endometriosis is only within the reproductive organs.
Dr. Dan Martin:
Why don't we start even before that? Let's talk about what is the pelvis. So if we can, what I want to do is I'm going to shift over and see if I can make this thing ... If we look at that, that's just a picture of a normal pelvis. The great big white line where the pelvic brim is, that's the bony structures that surround the pelvis. Inside that are all the pelvic organs. Uterus is in the middle, tubes and ovaries on either side, the sigmoid colon coming down the middle. And in this patient, a small loop of the ilium slipped into the pelvis on the left and the omentum's on the right. What you cannot see but it's also in the pelvis is the bladder back behind the peritoneum, it's in front of the uterus. If you look inside that circle, you can see that what's inside this circle is slightly more white than the yellower areas outside. The white area's the muscle of the bladder. The line is the ureter coming out of the bladder going up the side wall and then going all the way up toward the kidney off the field.
Then there are nerves everywhere. So we've got lots of nerves, they come in all over the place. And for those of you who understand anatomy, this is really a picture of an obturator hernia but that's not part of the talk today. So if we look at that, we know that what is in the pelvis is the list on the left that you can see. So you can see these in the pelvis, the uterus, tubes, ovaries. What you cannot see is the cervix, vagina, rectum, bladder. On the right, the sigmoid colon, ureter, and nerves can be both in the pelvis and outside of the pelvis. So they can be both intrapelvic and extrapelvic, and then the small bowel, appendix, and pelvic kidneys are usually outside the pelvis but can sometimes slip inside.
Similar picture, bladder, uterus, tubes, ovaries was there but it was. If we get outside of the pelvis looking up at the diaphragm, we can see the diaphragm which is above the liver. So the liver's down below, the diaphragm up at the top. This is looking toward the lungs. And in the middle you can see some endometriosis right along that line. That slide's out of sequence but we'll do it anyway. So sometimes these things are hard to see. If you look at this picture, you can barely see the red line which is around a little 400 micron lesion and the yellow one around a 200 micron but if we magnify those they're easier to see. So we can see that little red .4 millimeter lesion or 400 microns and an 0.2. This magnification we cannot get with a laparoscope. This is the magnification you get if you use 35 millimeter film to take pictures and you blow it up after the surgery's over. So we can't see all these other little lesions that are scattered all over the place including a little 0.8 millimeter one.
So that you understand, David Redwine, I, and anybody else who's ever measured them have never seen dual laparoscope anything significantly less than 0.2, all those others are routinely missed at laparoscopy. Luckily enough, those things are probably transient, they're probably not important. There's some good data now on bowel where those small lesions are seen where those apparently do not affect anything long term. So some endometriosis doesn't look like it's going anywhere.
If we look at this one, another picture of the diaphragm, liver below but you can see the endometriosis up above, little black area in the top. And if you look carefully, you realize she has endometriosis over on the far right side of the field and even more carefully you realize that is an entire band of infiltrating endometriosis throughout. So we see endometriosis in this area across the entire diaphragm.
On the other side of the diaphragm, this is with a cystoscope in. This is a thora scope looking in from the top. You can sometimes see these little foramen which is how we think the endometriosis gets through into the pulmonary cavity in some patients.
Another type of extrapelvic endometriosis or endometriosis found in incisions. This case I wish I had extrapelvic, I wish I had real pictures but all I have on this one is the histology. That's the vaginal skin, highly magnified and a small area of endometriosis back behind it that almost got the patient sent to a psychiatrist. The physician taking care of her decided instead of sending her to a psychiatrist he'd send her to me because she had had a hysterectomy and was having monthly bleeding that nobody could find. That lesion is about two by three millimeters. When it bleeds, the amount of blood is about the size of the head of a pin. It's just enough to know it's there if you see it on your underwear but otherwise you almost don't know it's there. The way to find that is the same way we find ... And there's some blood in the endometriosis there and you can see the little red blood cells inside from where this thing is bleeding into itself.
The way you find that is the same way we find bladder fistulas. We put a tampon in the vagina, see if we can get blood on the tampon, and then you can look and see where the blood on the tampon was with respect to where the lesion is. Once we found it, it was fairly easy to get rid of it. It's just a small skin lesion, it's about the size of a pimple and it caused pain probably the same way a pimple does. All that blood caused expansion and pressure and pain.
Just another picture of where the pelvic brim is. It's from the top of the bone up in through here on the very top of the field and goes off to the sacral promontory which is not part of this picture.
So that's just a general overview of the ... I'm trying to get my screen. Stop share, there's my stop share button.
Dr. Michael Nimaroff:
Yeah. So if I could, that was great. I think to summarize when we talk about the pelvis and the pelvic organs, it's the uterus, tubes, the ovaries, some of the ligaments that support the structures of the uterus and the cervix and uterus sacral ligaments, a common place for endometriosis. But then the bladder sits in the pelvis and the colon and then there are the other, the ureter as Dr. Martin discussed. We can consider that pelvic endometriosis or extrapelvic because it really runs the ureter which connects the kidneys to the bladder very common site for, I would say, the more serious issue that can develop with endometriosis when we get obstruction of that tube. But again, the common place in the pelvis are those pelvic organs but certainly what we're here to talk about extrapelvic endometriosis is really again something I think probably under diagnosed. And certainly when patients are symptomatic from some of these conditions and areas of infiltration of the endometriosis, it tends to be a little bit further along and in the progress of the disease.
Diana Falzone:
It's very interesting. Just going back, exactly where can extrapelvic endometriosis exist?
Dr. Michael Nimaroff:
So as Dr. Martin touched on, certainly the GI tract meaning the small bowel, large intestine, the appendix very commonly gets involved often directly from its attachments adherence to endometriosis on the ovaries, especially on the right ovary. We call it endometrium, the endometriotic cysts that forms on the ovary, very commonly the appendix gets involved in that process. But the ureters, tubes again that connect the kidneys to the bladder and I'll let you go from there but certainly many other sites, especially abdominal wall from especially prior scars as was mentioned but I'll let you take it from there.
Dr. Dan Martin:
Then once it gets outside of that general abdominal incisional area, it gets into the lung fields, we found it in the brain, on the spinal cord, on skin. It can be found almost anywhere in the body under certain circumstances. As was said, it's generally under diagnosed because a lot of it is asymptomatic or it comes in as small little bumps that nobody knows what they are until they take them off. When we looked at diaphragmatic endometriosis in a routine fashion, we found that three percent of our patients had asymptomatic diaphragmatic endometriosis and about half of one percent had symptomatic and that's in the tertiary care population. So you can divide that by a factor of 10 or 100 to find out what is going on in a general OB/GYN practice or a family physician's practice, very little of it in those areas.
Diana Falzone:
What are some of the symptoms that someone should watch out for for extrapelvic endometriosis?
Dr. Michael Nimaroff:
Sure. I'll take one that I see not infrequently because of our rate of C-section in particular in the United States. We do see abdominal pain and again it tends to be cyclic so along with the menstruation at times and then gradually will form an actual mass on the abdominal wall at times. And we'll see that in specifically around our C-section scar incisions on the skin, on the abdomen, not in the uterus but we're talking about on the abdominal wall as well as after laparoscopies or other types of surgeries you'll see it around the belly button. You can it really anywhere there's an incision. But commonly, again, when we're dealing either as a result of endometriosis surgery or like I said C-section is a very, very common cause. But then there's multiple other symptoms. That's one that we do see not uncommonly from on the abdominal wall. But certainly others just on the GI tract, on the small bowel implants on the small bowel patients are bloated, some patients have again real issues with a small bowel obstruction can develop. These are much later on.
But certainly GI symptoms. And then I'll let you touch on some of the thoracic issues that can develop.
Dr. Dan Martin:
In terms of chest, there's a syndrome called catamenial pneumothorax where women during their menses will actually bleed into their chest, not pneumothorax but hemothorax, where they will actually have bleeding into their chest and collect blood in the chest cavity around the lungs. That is associated with pain and bleeding and shortness of breath and it gets them into the emergency room. It's one of the things that you almost have to treat with suppression as a first line because trying to find endometriosis in the thoracic cavity is a hit or miss proposition at all levels. It can be on the diaphragm where you expect it, it can be along the lateral side walls, it can be on the lung, and occasionally it gets inside the lung. And once it's inside the lung, until it gets large enough to be seen on an MRI or some sort of scan, that's probably 5 or 10 millimeters. The scans really don't see anything much less than five millimeters. Until it gets large enough to be seen, we can't do to the lung what we can do to bowel peritoneum cul-de-sac, we can't push them down.
If you grab the bowel, it's like this little web between your fingers, you can squeeze it between your fingers and you can feel things as small as bee bees in that. But the lung is like a great big lump of tissue. You can't squeeze it, you can't feel the thing so once it's inside the lung once it gets large enough you can image it and then you can try and use imaging and [inaudible 00:14:36] to find the disease while you're operating but until then it can't be found.
Diana Falzone:
You mentioned, Dr. Martin, about suppressing that extrapelvic endometriosis if it was in the lung cavity. What kind of medical treatment or intervention would that be?
Dr. Dan Martin:
Usually the easiest thing to use, because it has the fewer side effects as a low-dose birth control pill. for people who don't like the option of being on birth control pills, we can build one out of estrogen and progestins. If that doesn't work, in theory progestins alone should have a better chance because there's no estrogen to stimulate the endometrium and except in those rare circumstances where people don't have progesterone receptors that will generally work. So either oral progestins, if that doesn't work, intramuscular progestins, the progestin-related IUDs. If none of those work, then you knock out the entire geno tropin system with one of the geno tropin agonists or antagonists in this day and time.
Diana Falzone:
I've spoken to several women who have had the unfortunate situation of actual lung collapse from endometriosis. Can we discuss that a little bit more because I know that's something that people with endometriosis hear extrapelvic and worry that could happen to them? And we'll get into just how common it could be. But can you explain why a lung collapse would occur?
Dr. Michael Nimaroff:
Yeah. Basically, it forms from the [inaudible 00:16:06] of the endometriosis into the actual lung tissue, you can get an air leak. And so it's what's called the pneumothorax, something similar to what can happen, let's just say, from an injury, from a rib fracture or something where it actually punctures the lung. Okay, well here it's actually because of the tissue causing obstruction to the actual labial or lung in the lung. So again, the difficult thing is it's not an easy diagnosis to make. So this is, I think again, one of those areas that people have to think about endometriosis and certainly for if you're coming into an emergency room you're seeing thoracic surgeons getting involved, it's not something that necessarily going to be the first thing that they're considering as a diagnosis but certainly in a woman who's having any kind of recurrence thing because that can happen is that the patients who tend to have this will have a recurrent problem. But we do have to try to think about that endometriosis is certainly a possibility.
Diana Falzone:
Mm-hmm (affirmative). And that's something that patients should possibly raise if they can't find any is could this be endometriosis is a good question to maybe ask a surgeon or someone that's in the medical field.
Dr. Michael Nimaroff:
Correct. And again, it's difficult to say what the incidents I think overall I think we can agree that it's relatively uncommon. It's pretty rare so I think generally speaking women with endometriosis shouldn't worry too much about that potential although, like I said, it can absolutely happen and it does.
Diana Falzone:
And speaking of something scary, it actually happened to me about almost a year and a half ago with my ureters. I kept having flank pain and a low-grade temperature, kept getting tested for UTIs they were negative. I thought, "Well, they just must be missing a bacteria here." And I ended up having surgery with Dr. [Sedgkin 00:18:12] and Dr. Wolfstein and my ureters were, as they said, were like sausages from endometriosis. And they said I was about two weeks away from possibly going into renal failure. That's obviously not common but as somebody who's had quite a journey with endometriosis, I didn't even know that was a possibility to even be aware of those kinds of symptoms with endo.
Dr. Dan Martin:
Yep. And you may be one of the lucky ones, believe it or not, because most of the patients I saw who had that found out that they had it after the kidney was dead.
Diana Falzone:
Wow.
Dr. Dan Martin:
So they were able to save your kidney.
Diana Falzone:
Yes.
Dr. Dan Martin:
I hate to tell you you were lucky because I know what you went through getting that done because that's just a miserable thing to go through. But I've had three patients lose kidneys and there are patients in the literature who lost both kidneys because ureteral endometriosis is usually so silent, it just doesn't cause enough symptoms to know that anything's going on. And the first time you find out is when somebody is evaluating a patient for pelvic pain and they get a scan and they realize that one of the kidneys is missing.
Diana Falzone:
Yeah, that's very scary. What is the origin, not the origin, but how frequent would you say that occurs?
Dr. Dan Martin:
All three of the patients I had did not come out of the Memphis referral area, all of mine were regional referrals, not local referrals. So my regional referral basin was three million, so over 40 years I had three patients with a referral basin of three million women. So it's very rare, it happens. In New York, if you're talking about one in a million, how many million people are there in New York? Sixteen million plus or minus?
Dr. Michael Nimaroff:
Yeah, somewhere in there.
Dr. Dan Martin:
You probably have 16 or more women walking around in New York alone with that right now.
Dr. Michael Nimaroff:
I think what ... But the ureter is, let's say, often I think it's more commonly involved than having a sort of a real obstructive issue. Again, patients who have, again, specifically with ... It can happen outside of ovarian endometriosis, it can be just isolated endometriosis implant on the side of the pelvis where the ureter travels, certainly it can happen there as well. But not uncommonly I think it happens in association with endometriotic cysts on the ovary as well that often just get scarred to that side wall where the ureter is. And I think it happens more common than we think as far as the involvement, not necessarily complete obstruction requiring again [inaudible 00:21:06] or re implantation but certainly it's something we have to watch out for.
I find that, again, since this is picked up on ultrasound when it's a little bit more advanced, it's something we can see on ultrasound. That's one of the few things we actually can pick up when the ureter and the kidney is partially obstructed. So again with the wider use of ultrasound, we hope that issue of really losing the kidney happens very infrequently.
Diana Falzone:
And like Dr. Martin said about being lucky to be symptomatic sometimes in those cases because I thought it was a UTI, I was symptomatic, that was able to get me into an ER to get the right treatment. But if someone feels like they could have something really wrong and everything's coming out negative, would you recommend that they get checked for this kind of endometriosis? You really can't until you get surgery.
Dr. Dan Martin:
It depends on who's doing the evaluation. If somebody's doing pelvic scans and scans the abdomen, it won't come out negative. I imagine you had flank pain up underneath your rib cage.
Diana Falzone:
I did, yes.
Dr. Dan Martin:
Yeah. Somebody comes to you with endometriosis with flank pain, you need to know what their kidneys look like. And if that's not done as part of the basic workup, somebody has to get to that sooner or later. Sooner is better.
Dr. Michael Nimaroff:
Yeah. No, absolutely. We can pick up the early implants, the only way we're going to see that is with surgery, but again when it progresses a bit especially when someone's having symptoms we should be able to see that on sonography. But again, as you mentioned, you got to include a look at the kidney because that's something, let's just say, isn't always done as part of a routine pelvic. Some radiologists do that routinely, some doctors do it but it needs to be a part of the evaluation.
Diana Falzone:
Is extrapelvic endometriosis more advanced in the disease? Does that usually happen when someone's had the disease longer?
Dr. Dan Martin:
I wouldn't think so. So if we look at the patients I had with diaphragmatic, I'd have one patient every four or five years who would have diaphragmatic endometriosis that was symptomatic. And I'd have what? Five or 10 a year who had asymptomatic. So 90% or so was likely asymptomatic causing no symptoms at all and when [Mehta Moon 00:23:55] who's in Norway looked at asymptomatic endometriosis that was found incidentally and followed that over 10 or 12 years, those women do as well as anybody. So asymptomatic endometriosis is not generally a problem. You can't be sure of that and that's the reason you'd like to remove it but in general most asymptomatic endometriosis is not going to progress.
Dr. Michael Nimaroff:
Yeah. I agree. I think it's extremely difficult. And this is one of the problems with this whole disease, this whole condition is that does it go through this progressive state and in some cases obviously it does but in others, for example, some of my patients who were the most symptomatic and had the most advanced endometriosis were also some of my younger patients who you would say, let's say, have not been ignored for so long. So I think there's different processes and pathophysiology behind how all of this forms and I think it depends on which one a patient has. The ureter though, I would say though, but it's not uncommon that with that process it is a progressive one. It starts with, let's say, small implants, small amount of scarring and it progresses over time. So I think in that case that's one of those where I would say it's not going to just show up suddenly without having had a milder case I think at some point earlier. But again, that's still the jury's out.
Dr. Dan Martin:
And that's reasonable. The other way to look at that though is by the time we see it, that is a selected group. It's like looking at anything retrospectively, that's a selected subset. Had we seen that 10 years earlier and had 10 patients who had the exact same thing, one or two would do what you did and maybe the other number would not have done that.
Dr. Michael Nimaroff:
Oh exactly.
Dr. Dan Martin:
And that's the reason that I would love is not only a marker to diagnose endometriosis but I want a marker that tells me is it getting worse because if somebody is asymptomatic, has a positive diagnostic marker but a negative progressive marker, then we can reassure them that we're probably okay watching them. Right now when we watch them, it's just hit or miss. We're guessing at whether it will progress or not. And I hate to outguess endometriosis for the same reason Diana understands and that is this stuff can do some damage.
Diana Falzone:
Yeah. And it can seem like it's coming on fast and furious. One day you're okay, and the next day you're thinking why is my body attacking me, so to speak. Which leads me to ask, what is some of the best management that you can do for extrapelvic endometriosis?
Dr. Michael Nimaroff:
Again, I think ... So first of all, obviously it's number one we have to make the diagnosis. Sometimes we've been making the diagnosis, we may make it based on an MRI, for example. So for example, an abdominal wall implant I may feel a mass [inaudible 00:27:21] has a good story for it being endometriosis because of the severe sick with pain along with their menses. And then we'll get an MRI which will really is pretty good, it's not 100%, but it's fairly diagnostic in many cases. And depending on the size, sometimes we will try to suppress those as well. If it's larger and depending on the patient's symptoms, then we'll excise them as well. But we do try to suppress. And I with many of these conditions, I tend to go towards progesterones very often and I do think especially IM progesterones and oral progesterones as well as my first line.
If they're very symptomatic ... With the pill I find, for very mild symptoms I will try the birth control pill but if someone really has a true nodule or whatever I usually go to something a little stronger as my first line. But ultimately, again, it's still a question of the relief of the symptoms and depending on what it is. In your case, if I may, and I just had this case two weeks ago with the same thing, an obstructed ureter and we did along with urology did a ureteral re implantation into the bladder. You're not treating that conservatively, let's say. We have to do that. Although, other patients they'll try to stint depending on if it's mild we sometimes will pass a stint to try to buy more time. So I've had patients that we also have who are stinted and we suppress them, again same story, with medicine and that can work too for a period of time. So it really depends. There are options but really from my standpoint it depends on the severity of the symptoms.
Diana Falzone:
Dr. Martin?
Dr. Dan Martin:
I wouldn't add nothing to that. Symptomatic or if there's evidence of obstruction, you need to do something.
Diana Falzone:
Just wrapping up here and this is obviously a very rare occurrence, I don't want anybody watching to get nervous, but you did mention that endometriosis could be found on the brain. I've read that in literature as well. It's usually a one percent chance. But how does that even happen?
Dr. Dan Martin:
Then you get into all these theories of how does anything happen. The best guess ... I really like some of the stuff that's coming out of Yale on that right now in terms of how things get into the vein and move around venously. It goes back to 1921 when some of the early theories 100 years ago were that it was disseminated through the bloodstream. And we can disseminate not only endometriosis through the bloodstream but also bone marrow stem cells that under the right conditions can turn into endometriosis. So if you look at the origin of endometriosis in terms of cells of origin, the cells of origin can be normal endometrium through retrograde menstruation, congenital rest of mullerian tissue, both of those are normal mullerian tissues or non mullerian like bone marrow stem cells, peritoneum. Endometriosis does not have to come from a mullerian source.
Diana Falzone:
It's very intriguing. Very intriguing. I think extrapelvic endometriosis there's still so much to learn about the disease at large let alone all the other organs that it can, I use the word attack just as someone who has it because it does feel when endometriosis goes after you it does seem to just take siege. Thank you Dr. Martin and thank you Dr. Nimaroff for joining us.
Dr. Dan Martin:
Thank you, it's been a pleasure.
Dr. Michael Nimaroff:
Thank you very much. Thank you.
Diana Falzone:
topic extrapelvic endometriosis.
Margaret Caspler Cianci:
Okay everyone. Welcome back and thank you for listening to this tremendous panel about extrapelvic endo. We really appreciate and are very excited to have both Dr. Martin and Dr. Nimaroff with us. It is a wonderful opportunity to have some of your questions answered. Unfortunately, we won't be able to get to all of them but we'll try to group as many of them together as we can. So Dr. Nimaroff, the first question there seem to be a number of questions actually around diagnostics. So one of the questions that comes to us is do you need to wait until you have a laparoscopic procedure to see endo? My OB/GYN wants to do an ultrasound to see if anything was missed during my first procedure. And then Amanda asked a very similar question which is how do I know if my surgeon has looked in all of these places for endo? How can I ensure that going into surgery will look for all of the potential endo? So a number of questions about how do you find it and how do you know if your surgeons are seeing it all.
Dr. Michael Nimaroff:
Okay. Well, great, great questions. Thanks. First of all, good afternoon everyone. And so we'll start, again generally speaking, so we start by saying endometriosis is really diagnosed by history is one step and obviously the classic story of history of cyclical pain. So pain especially around menses. But obviously not everyone has classic symptoms and symptoms alone do not make the diagnosis. And clearly the definitive diagnosis is made by our inspection with laparoscopy and then biopsy, biopsy proving. So again, not every single patient needs to have surgery and it depends on the symptoms but certainly someone with persistent symptoms who's not getting relief with let's say some of our early attempts at treatment really need to then move on to the more invasive tests. But we would start and obviously we start with ultrasound.
So ultrasound what are we looking for in patients? We're looking for some evidence of an endometriotic cyst. Sometimes we actually see evidence, obviously there is a cyst consistent with endometriosis on the ovaries and that can be fairly diagnostic. But if we have a normal scan, some normal imaging, generally speaking the next step is moving on into the laparoscopic the surgical evaluation. Some of the other questions that you brought up were as far as how do you know that we've looked everywhere. It is dependent on the surgeon and the comfort level of the surgeon. So it's important to be seeing someone who's comfortable with treating endometriosis and experience because clearly we want to take a thorough inspection of all the potential areas and especially the more common areas that endometriosis sits.
So we do it by visual inspection but also again by sizing and having really biopsy proving that endometriosis is present. There are labs working on noninvasive tests and that's obviously an exciting area and we hope to have something in the next few years where it will aid in that noninvasive diagnosis of endometriosis even without surgery.
Margaret Caspler Cianci:
Thank you, Dr. Nimaroff. That is why the funding of research is so incredibly important. And actually your hospital, Northwell and the Endometriosis Foundation have a joint study going on to try to come up with better diagnostics. So one of the ways that all of your funding that you contribute to us does in fact go to research for just those reasons trying to find a noninvasive way to diagnose it. Dr. Martin, we've had a number of questions about endo and the ureter. A number of patients are wondering is ureter endo related to interstitial cystitis? What is the recurrence rate for bowel and ureter endo as opposed to standard pelvic endo? And how often should you get checked if in fact you've had endo impacting your ureters?
Dr. Dan Martin:
Well, three questions. The first one is the ureter and interstitial cystitis are really two different areas. Remember when we were talking about the urinary system, we've go three specific areas. The bladder, the ureter, and the kidney. The bladder endometriosis could be associated with interstitial cystitis, they're in the same area. The ureter connects the bladder to the kidney and should have nothing to do with interstitial cystitis. And the kidney's up in the right flank right beneath the right rib cage, the right ureter is, the left one's on the other side. So if someone has pain underneath their rib cage just in the back on either side, you have to be concerned that the ureter could be involved. But that's not related to interstitial cystitis.
The second part of the question in terms of ... So let me go to the third part of the question. If you resect ... Let's go to the picture, let me go to my picture. I'm going to go to a picture for a second. See if the picture comes up. Did the picture come up okay?
Margaret Caspler Cianci:
Yep, perfect.
Dr. Dan Martin:
Can you see my cursor moving on the picture?
Margaret Caspler Cianci:
Yep, we see it.
Dr. Dan Martin:
Okay. So if this is a picture of endometriosis and this is superficial endometriosis, this is not deep endometriosis, this is superficial. The ureter is this tubular structure that goes up through this area. So the ureter goes in through there, the ovary is up in the top right-hand corner, the uterus sacral ligament is this round structure in this area, the rectum is down in there, the sigmoid colon except that looks like small bowel. This is either small bowel or sigmoid colon and it looks more like small bowel. But this is endometriosis. The ureter, this structure here, is about one to two millimeters behind the endometriosis. If you put that in inches, it's about 1/16 to 1/32 of an inch, so almost no distance at all between the two, 95% of the time this endometriosis is not attached to nor does it surround the ureter. And this one is just flat across the area, it doesn't touch the ureter and that's the reason you can be sure it's superficial because if it were intermediate or deep it would either be surrounding or involving the ureter.
So on this one what you do is you make a small incision across the top up here where there's nothing dangerous, you pull the endometriosis to the side and you push the ureter away. That works 95% of the time. And when it works you handle this the same way you handle endometriosis anywhere, you just cut it off. So we can remove that area and not be concerned about the ureter because in 95% of the cases it will pull over without much difficulty. And the five percent where it's stuck to the ureter, if the surgeon is ready for ureteral surgery then the answer is you go to ureteral surgery. For me, that meant I had a urologist near us. I don't know if Dr. Seckin or anyone else here has done ureteral work, I didn't do mine which meant for me had it been attached to the ureter I had to have a urologist involved. But then you resect that.
Now one of the interesting things I like about this slide is not only is there endometriosis here but if you look at it there's a dark area of endometriosis here, there's a vesicle of endometriosis there, there's a little white lesion of endometriosis there, and there are a lot of just general abnormal areas of the peritoneum. So if you look at those, those four areas are all endometriosis which is one of the reasons it's hard to see it all because you see that big one in the middle you forget that there are little satellites everywhere. And if you look at the information that came out of Atlanta where 25% of abnormal peritoneum is endometriosis, those areas are all abnormal peritoneum. So abnormal peritoneum has a 25% chance it's endometriosis. So it can be anywhere.
The reason that it's hard to find that is because it would take 900 to 5,000 sections to find all of those. So you either resect the entire area or if you try to do those individually like Harry talked about the other day, you could end up with 2, 4, 6, 8, 10, 12, 14, 16 different individual little areas and there's no real reason to do that. There was a third part of the question that I've now forgotten. What was the third part of the question?
Margaret Caspler Cianci:
The third part of the question I guess really what is the recurrence rate for bowel and ureter endo?
Dr. Dan Martin:
Okay. So for ureter, if it's this type here that we have on the screen your recurrence rate is going to be close to zero. You can get behind it a healthy tissue planes, you can see where you're going, it's easy surgery. If the ureter were attached to the endometriosis and you were trying to limit the amount of surgery, then what you could do is what I've done in the past and other people have done in the past is you can either intentionally or unintentionally leave endometriosis stuck to the ureter in which case it's going to be there. It's not coming back, it's just never went away. The chance that it will come back all by itself ... If you remove it all, the chance it will come back again is not zero but it sure approaches zero.
Margaret Caspler Cianci:
Thank you, Dr. Martin. It's interesting, a lot of the questions, again, everyone is most appreciative to you both for talking about extrapelvic in so many different areas. I'm reading comments thanking people about the kidneys as well an pneumothorax. But the next question, which I'll send to Dr. Nimaroff, is interesting. Jennifer writes, "I have intense lower back pain often on the lower right side accompanied by persistent sacral pain to the extent that it's caused by endo which I believe it is, is that considered pelvic or extrapelvic endometriosis?" And I'm going to add addendum to that question. Which doctor should she be going to?
Dr. Michael Nimaroff:
So certainly pelvic and back pain and I think you described it as sciatic pain as well that Jennifer's having, and I think certainly it can be considered and it could be found with pelvic endometriosis but also with extrapelvic. And it really is a question, and first of all, we do always want to rule out that it's not primarily a neurologic and it's true musculoskeletal pain so it could be unrelated, could be. So certainly seeing a back specialist whether it's a neurologist or an orthopod just for an evaluation to ensure that there's not some underlying primary back issue. But certainly this could be related to the endometriosis as well.
And so there can be involvement of the nerve roots as well with endo but it's a little bit more complex to diagnose but certainly it needs to be looked it. Obviously it's a question of the severity of the pain and how debilitated you are from this back pain, but certainly I would start if it's not been evaluated before I think you start by whether it's an MR of the spine to just look to see is there potentially a primary musculoskeletal binding. And then we go the endometriosis route if that's negative.
Margaret Caspler Cianci:
So unfortunately we only have time for one more question. We really appreciate both of you being here and answering these. There's so many more questions and hopefully we'll be able to answer some of them after the seminar is over. But this one's interesting because it comes from a researcher and her question is, how comfortable are we with the actual prevalence of endo when we know that diagnostic error is so pervasive in endo? I'm going to ask you, it's rhetorical but I'm going to ask you both maybe to comment a little bit and then just give us some final thoughts. Dr. Martin, why don't you go first?
Dr. Dan Martin:
So right now I'm in the process of reviewing 17 articles on asymptomatic endometriosis found at the time of tubal ligation. If you look at all the studies, then 6.7% of patients who never knew they had endometriosis, had no idea it was there were found to have that on tubal ligation. That's all the studies. But if you separate those out into studies that had a prospective protocol and a defined surgical technique, it jumps to 16.7%. Most of the low-range of that is related to control groups in which case they were just pulling any data they could and in those cases it's 1.2%. So when you ask what's the prevalence of endometriosis, the prevalence of endometriosis is related to the interest of the physician, the expertise of the physician, and the protocols and expectations they have in the people in the study.
My guess is that the 10% we talk about is 10% of the women have a diagnosed endometriosis. It looks like there's at least another 6.7% if you want to believe the low range or 16.7% who are not diagnosed. Dr. Shaffer finds that there's another two percent who are symptomatic who should've been diagnosed but they haven't been diagnosed yet. So at a minimum, we have a real rate that's approaching 30% and if Ralston is right it's probably closer to 50%. So take any number you want but the data is so diffuse and it's related to who did it that it's difficult to discuss. There is a long, long, long conversation about garbage in, garbage out and computers that we won't go in today because it has to do with how the problem with big numbers. The bigger the numbers and the bigger the volume you have of patients, the more chance there is you have included physicians who are not at all interested in what you're looking at.
The computer has to be programmed to look for what you're looking at. When you go looking at it retrospectively, you commonly get trash out of a computer.
Margaret Caspler Cianci:
Dr. Nimaroff, final comments and thoughts. That's pretty substantial to go from 10% to potentially 30%. Any final thoughts that you'd like to share with us?
Dr. Michael Nimaroff:
Yeah. I just wanted to share that I think clearly when we're talking from a research perspective, obviously definitively and this is where we get a little gray is that we're not always talking about biopsy proven when we're talking about the studies and that's where it gets gray. So for your researcher, I think clearly where we need to go in this space is really focusing on biopsy proven because of the wide range of that disparity among the practitioners. And again the symptoms and if we're not even performing surgery going by symptom diagnosis, that's a whole nother story. So reality is as we advance, I think the feel then is certainly the research it's really focusing in on biopsy proven. I think that's where-
Dr. Dan Martin:
Give me a number for biopsy proven.
Dr. Michael Nimaroff:
I'm sorry?
Dr. Dan Martin:
Give me a number for biopsy proven.
Dr. Michael Nimaroff:
It's probably much closer to the 5 to 10% range.
Dr. Dan Martin:
Well, we're probably closer to three to eight percent, three to seven percent.
Dr. Michael Nimaroff:
Yeah, yeah.
Dr. Dan Martin:
Yeah. So talk about biopsy proven, it's a really small number compared to the other numbers.
Dr. Michael Nimaroff:
Yeah. And that's where it's gray. But having said that, that doesn't mean, I'm not trying to say that absolutely everybody needs to have surgery and biopsy proven. It really depends on the symptoms and ... It's still appropriate to use medical treatment for someone with mild symptoms. But we certainly have to keep it in mind that clearly patients who have continued symptomatology are not getting relief. It's important to go to the next step.
Margaret Caspler Cianci:
Thank you both. We so appreciate this session. And again, just from the volume of questions, obviously a very, very important topic so I'm sure we'll have you both back again. Thank you, Dr. Nimaroff and thank you, Dr. Martin.
Dr. Michael Nimaroff:
It's our pleasure. Thank you.
Dr. Dan Martin:
Thank you.
