Endometriosis Foundation of America
Virtual Patient Conference, October 16-18, 2020
IBS is BS when it is Endometriosis….Culprit in the misdiagnosis, and years of delay.
Tamer Seckin, MD
Moderator: Diana Falzone
Now we have Dr. Tamer Seckin. He is the co-founder of the EndoFound. We're going to talk about IBS and endometriosis, and how many women get misdiagnosed with IBS, when in reality it's endometriosis. Hi, Dr. Seckin.
Tamer Seckin, MD:
It was like yesterday, beautiful day outside, and yet we are here committed to the cause.
Yes. So Dr. Seckin, there's been a lot of talk about how women will say for years they were told, oh, you have IBS. You have IBS. And then they find out 7 to 10 years later, give or take, that the whole time it's actually been endo. Why are so many women misdiagnosed with IBS?
Tamer Seckin, MD:
Well, this is a 10-year delay question. So it is not an easy for everyone maybe to understand. But I have some picturesque animations and graphics. It's very, actually, simple from my end, because I end up looking at these lesions and see them.
First of all, IBS symptoms and endometriosis symptoms almost completely overlap. There is one magical question the practitioners, whether it is primary care doctor, internist, general knowledge lacks. Do these symptoms flare up? Do they worsen? Do they get more symptomatic with periods? Around the periods? Or do these symptoms have laterality, right side, left side? So these are very prognostically important as far as diagnosing the endometriosis, or at least detecting it. Without operation, there is high index of suspicion it is endometriosis.
Many times when a patient comes to the office, we question... If I have time, I will go over the questions that we ask. Many times we know if it's endo or not, 90% of the time, even more. Very rarely we have been wrong when certain symptoms like symptoms of IBS-like gas, bloating, flatulence, abdominal pain. But yet, if they are accompanied by other bowel symptoms like diarrhea, constipation, that are getting worse around period, when the patient comes to the office, you check the patient, there's tenderness in cul-de-sac in one side. Even though they don't have any advanced endometriosis that we can really tell most of the time by sonogram, called endometrioma or rectovaginal disease by exam, we can suspect by tenderness, it is most likely endometriosis. And we pretty much know there is, but we will never know the extensiveness of endometriosis. And endometriosis is primarily disease of the peritoneum, thin lining of the internal organs, that if I can share my screen, I can go over a couple of things with you so I can explain you this.
So let me do that. Well, it's that irritable bowel syndrome is the disguised endometriosis culprit. As you question, that's one of the main reason endometriosis gets undetected, because the symptoms are not understood well by the primary practitioners. They are referred to a GI doctor. And after many, many endoscopies on colonoscopies, patient still doesn't know where the problem is. Among patient, it is endo belly, as you all know, you're all familiar. In very short time, these flat bellies can go like that, during the period time, especially. And it is really a functional gastrointestinal disorder. It's a syndrome. So there is no pathologically where the doctor can do anything by biopsy or so, that can really show the patient has endometriosis.
One thing with irritable bowel syndrome, we should be alert from medical standpoint of view. We pay attention to inflammatory bowel disease, IBD. This is Crohn's disease or ulcerative colitis. That's why many GI doctors do colonoscopy and endoscopy. However, endoscopy really looks inside the bowel and doesn't see the outside of the bowel, which we see in our laparoscopy, we see all these lesions. Even though they are on the bowel or retroperitoneum, there is no way this colonoscopist or GI doctor will diagnose endometriosis.
This is a case we did just yesterday, actually, Friday. It's interesting. This is bowel, a part of the bowel often involved with endometriosis. What you don't see is I'm going to show you, there's lots of endometriosis in the rest of the bowel. This is inflamed appendix. Chronic appendix patient has been suffering with both symptoms. In this case, this patient had both inflammatory bowel disease, which is chronic appendicitis, and also endometriosis.
So these are the symptoms of endometriosis we look for when the patient comes. We ask really a lot of questions, like a detective. We want to know how severe the endo is. Along with pain with period, we've question, we scale it. We ask for ovulatory pain, mittelschmerz, whether it is right or left laterality. It's important to know how regular the periods are. If there is any heavy bleeding, clots, the frequency of periods, and the amount of bleeding. Certainly we ask bladder symptoms, but most importantly, one of the most focused aspect of our questionnaire is about the bowel function. Do we have gas, bloating, vomiting, intestinal, cramps, constipation? How often you empty your bowels? Every three days? I know a patient who go number two every 14 days. I mean, it's hard to believe. Do you have diarrhea alternating with constipation? Do you have painful bowel movements? They all mean something to us.
We also ask pain with sex question, arousal, orgasm, after, the next day. This is also very much directing us to the rectal vaginal anterior rectum disease. We additionally asked leg pain, sciatica pain, hip pain, chest pain with period. All of these symptoms, as they are flaring up with period, being more pronounced, lead us to endometriosis.
The most important part of endometriosis to understand, I think audience should pay attention to this comment I'm going to make. Apart from this definition of mine, endometriosis, it's a stem cell orchestrated hormone estrogen dependent fibrosis inflammation in reaction to endometrial-like tissue.
Most importantly though, it is primarily located 99% of the time in the pelvic peritoneum. This is peritoneum. You see this lining here? It covers all internal organs, but also the visceral peritoneum. This is called the parietal peritoneum. This is the visceral peritoneum, mesentery. They have different nerve connection to the brain. Pelvis have different, and the intestines have different nerve connections. That's why gas, bloating, is part of the small bowel issue most of the time, rather constipation, painful sex, painful bowel moment is associated with the large colon, the descending and rectosigmoid colon.
So this is very important findings. This is something I presented years ago, seven years ago in AGL. We excised close to 3,500 endometriosis lesions. Out of these, it's interesting to know, everybody, almost 70% of the time, the disease were outside the uterus, ovary, and tube. It's on the bowel and cul-de-sac. On the reproductive organs, 14% in wall, the tube, uterus, and an ovary. This is peritoneal endometriosis. So you can understand why IBS is often... I'm sure it is clear to most of you. I can answer the question about this later. But this peritoneum is a magical organ that covers most of the intestinal outer lining of the intestines all the way from diaphragm to vagina.
So this is endometrioma, some graphic representation. Endometriomas do spill and that's very frequent cause of hospitalization emergency. So very rarely diagnosed, ruptured endometrium. These patients do get treated for PID in the absence of any organism being produced. So this is an animation of how endometrioma may spill. As you see, the rectum gets fused. This patient will have extensive constipation, pain with sex, and bloatedness, their bowel movements are pencil-like. They describe it very clearly. As you see when endometrioma ruptures, obviously it could infiltrate the bladder and further on.
So this is an example of ruptured endometrioma picture we recently found. These are animations of what really internally the female pelvis go through every month. On the left, this is mittelschmerz. The ovulation happens and there's fluid [inaudible 00:11:43] into the pelvis. On the other side, you see there's retrograde bleeding. I'm not saying retrograde bleeding causes directly endometriosis, but with moving bowel actions, these period artifacts really hide in the caves and corners and the curves of the pelvic sidewall, and these stimulate inflammation. And then how this angiogenesis and stem cell mediated endo starts. Period is probably triggering factor, but there's many other factors genetically ingrained to our genes that promote endometriosis.
So some more pictures. When you look at this, this irrigation is 5 millimeter, irrigation the diameter of this. These are probably close to 200 micron, and we can see that. This is an adhesion inside the adhesion. This is small, probably 2 millimeter altogether. There are endo glands already. And we can see that during our procedure.
This is adhesion. This is fibrosis. It's important to understand what adhesions are because adhesions in a large scale can cause intestinal obstruction. And this is a deep endometriosis, as you see, with pigmented and white lesion. Overall, it's all inflamed.
This is a ruptured endometrioma, as I mentioned. And this peritoneum, as I showed, not only shows the colorful pigmented lesion, but inherently it is defective. There are pores and holes in it. And these are potentially painful spots when they are irritated with anything that happens there. This is wide-range inflammation, as you can tell. Usually the peritoneum is very clean, silk-like tissue. This is retroperitoneum fibrosis. This is hypogastric nerve. This is on the side bowel. And this is ureter. But you see how dense behind the peritoneum these inflammation can spread. This is ureter in the same site where you see diffuse fibrosis. This is the cause of sciatica. This is the cause of back pain that aggravates with periods. Again, the same picture with hypogastric nerve, ureter, and bowels. And this is retroperitoneum.
This is what happens. I avoid showing many surgical videos, but in the end, this woman has, this is bowel, large rectum. It looks huge, but actually enough to cause serious symptoms. This is a nodule coming out from the rectum of the patient. In our practice, we see them often. I'm back to your question. I don't want to take your time. Obviously, this is a bowel resection specimen. You can see endo in the bowel can cause obstruction.
So in summary I should say, when IBS is symptomatic and flares up during periods, endometriosis should be considered seriously. And only by laparoscopy, we can verify and see these lesions. Upon their removal, these patients do exceptionally well.
Thank you for that presentation, Dr. Seckin. It's really shocking when you actually see what is going on inside. The pain makes it makes so much sense. The symptoms make so much sense. If a woman, a person, is experiencing these kinds of symptoms, what kind of doctor should they reach out to?
Tamer Seckin, MD:
I think, well, obviously we will say endo specialist is a doctor to go. But the bottom line, a gynecologist who is trusted and who is knowledgeable should be aware of the endometriosis overlapping with IBS symptoms. These patients first hand don't need surgery really. It's just, if they are caught early in the process of disease, certainly medical management is the key with birth control pills and at times IUD, stopping ovulation, stopping period or minimizing period is the key of management. However, if the symptoms persist or progress, it's important to know in some certain group of patients, this type of approach does not help endometriosis to be halted. I've seen so many patients on, obviously, because we see surgical patients, despite their been on birth control for 10 years, their endometriosis has progressed without any control, extensive endometriosis we see.
But again, the surgery is not the first step. The surgery is when medical management fails, then it should be considered and it should be excision surgery, no ablation, no electrocautery. When it is excision surgery, all the lesions should be removed. If you remove 99 lesion and leave one, it's like a mini electrical circuit. And they, with even one single stimulus, will press the button, pain centers that had developed for 10 years. It will evoke the same potential of pain in the patient. So if we understand that, that's why the surgery has to be as complete as possible.
How serious can bowel endo be, Dr. Seckin?
Tamer Seckin, MD:
It could be so serious. We've seen bowel obstruction in multicentered location. In other words, bowel endometriosis could be around the appendix, on sigmoid, and also rectovaginal, close to vagina. So I've seen three locations patient have gone through multiple bowel resection. Many times the patient may need, in deep endo cases where tissue perfusion is not healthy or repeat surgeries, that's the worst scenario, some sort of colostomy or ileostomy. I mean the bag, nobody wants to hear about it, but it is somewhat cannot be avoided. So the bag issue is probably the worst scenario of endometriosis of the bowel. So in general, about 20, 25% of the time, there is disease on the bowel. And probably 40% of the time, 40 to 50, when endometriosis is symptomatic with bowel symptoms, there is disease around the bowel, but causes the similar symptoms, as I explained about the peritoneum. That concept should explain you if there is disease around the bowel, there's 50% of the time that that causes the series of symptoms. So it is not uncommon. Many time gynecologists who claim who do these surgeries, don't get near to bowel because they are not trained. Endo surgeons could go and remove full thickness bowel endometriosis better than any bowel surgeon. And they can stitch it with the proper education and technique and experience. And as you know, bowel resection is the ultimate form of treatment we also perform.
Many of these endo cases have diaphragmatic implants also. Many of the diaphragmatic implants, however, do not cause symptoms unless the diaphragm is perforated or there are holes there. And these patients come with spontaneous pneumothorax. We call it catamenial pneumothorax. That's an emergency room call. And thoracic surgeons generally don't know endometriosis. In my hospital, they have learned very well now. So catamenial pneumothorax could be very well treated with the dual approach, as well as pelvic clean up, the thoracic cavity and the diaphragm is also cleaned up. [crosstalk 00:20:59] I'm here for further question if we have time. I'm not sure.
I think we have to wrap up, but we will be getting into extra pelvic endometriosis tomorrow, which you just touched upon. But this disease is just can be unrelenting, and I think it hearkens back to what you said yesterday, Dr. Seckin, about really early detection and diagnosis so that the disease doesn't get so advanced. Because you just should not have to even worry about having a colonoscopy bag. That shouldn't even be [crosstalk 00:21:32].
Tamer Seckin, MD:
Early suspicion, early detection, early diagnosis is the best prevention against future major surgery losing ovaries, against losing uterus, against the bowel, disease, against everything else.
And thank you for letting us know that the science and the symptoms of what bowel endo could be. Because if you don't know what they are, many times you go, "I guess it is IBS. Maybe I'm stressed. Maybe I eat the wrong thing." So thank you for sharing your time with us today and for all the work that you've done for over 30 years helping the women with endo.
Tamer Seckin, MD:
Thank you, Diane. You're doing terrific job. We appreciate your help.