Endometriosis Foundation of America
Endometriosis 2013 / When IBS is Really Endometriosis on the Bowel
Ken Sinervo, MD
First of all I would like to thank Padma and Dr. Seckin for starting Endofound because I really think that there are very important things that they are trying to progress in terms of early recognition. I think it was a perfect segue with Lizzie talking before me because, you know, she had endometriosis involvement of the bowel. That is one of things that is very difficult thing to diagnose in patients. The average patient it takes seven to nine years to get diagnosed. Patients with bowel endometriosis probably take maybe five more years than that. Again, it is a very difficult thing. My point of view is trying to navigate you through one of the problems dealing with IBS and endometriosis of the bowel. Then try and make it a little bit clearer as to how we can try to deal with that.
What I am going to talk to you about today is when is endometriosis of the bowel not IBS. And what your gynecologist or gastroenterologist does not know or might not want to tell you.
As you know endometriosis is very common. It affects 10 percent of women. It includes painful periods, pelvic pain, painful intercourse, bladder symptoms, back ache, bowel symptoms. Bowel symptoms are very, very common. It can cause the patient diarrhea, intestinal cramping and painful bowel movements. As well it may include bloating and nausea. In our experience about one third of our patients have constipation, probably two thirds or more have diarrhea. Often it is menstrual but sometimes it could be throughout the cycle. Or sometimes it can be alternating with constipation and diarrhea. About 40 percent have intestinal cramping, 20 percent have painful bowel movements. What the average gynecologist is going to do when they come across these symptoms they are not going to focus on the fact that you have pelvic pain. They are going to focus on the fact that you have these GI symptoms and that is not my thing so they are going to send you to a gastroenterologist. Or if you have any bladder symptoms they are going to send you to the urologist. Unfortunately that helps to delay the diagnosis, and often patients will be sent to gastroenterologist not only one time but maybe two, three, four or five times to get different opinions.
Irritable bowel syndrome has many different names. It is also spastic colon, irritable colon or spastic colitis. My wife and I went to see Cat on a Hot Tin Roof last night and I am not sure if anyone has seen that or read the book but in that the father "Big Daddy" he has spastic colon. It ended up being cancer but for most endometriosis patients the risk of that is extremely small. In terms of cancer I have never had an endometriosis patient develop cancer to my knowledge; so just putting it in perspective. Again, symptoms include abdominal pain, less so in the pelvis, and that is something to help differentiate it, intestinal cramping, constipation and diarrhea. Some may have predominantly one or the other or some may have both. Then there is bloating and fullness sometimes which is relieved by bowel movements.
It is not the same as inflammatory bowel disease, which includes Crohn's and ulcerative colitis, which are separate conditions which are diagnosed on colonoscopy.
IBS: About one in six people have IBS. Women are twice as likely to have it compared to men. Sometimes you can get what is called a post infectious irritable bowel syndrome in which you have infections - that tends to be less common but it can occur. One thing that happens with patients who have IBS with endometriosis is the fact that a lot of their symptoms occur at the same time. They start having these symptoms early on in their teens or early 20s, which is really the same time that women with endometriosis start having their symptoms as well. Over 80 percent of women with endometriosis have painful periods as their initial symptom and so, you know, again they are dismissed for a number of years saying, "Oh that's just normal, kind of deal with it" but ultimately they end up developing more symptoms, which finally end up being diagnosed.
In terms of working up a patient with bowel symptoms the first thing you want to rule out are other things like lactose intolerance, gluten enteropathy or gluten intolerance and that is a sensitivity to wheat, barley, rye and possibly oats. Inflammatory Bowel disease which is ulcerative colitis and Crohn's again. Cancer, again, usually patients with IBS do not have these symptoms but may present with weight loss or blood in their stools. It is really a diagnosis of exclusion. Once the gastroenterologist has ruled out these other things then they can make the diagnosis of IBS. It is kind of their wastebasket for someone who presents with bowel symptoms and they cannot find a reason for it so they must have IBS.
In terms of tests that they do they can do blood tests to rule out gluten enteropathy. They can also do stool cultures to rule out infectious causes. Often they will do an endoscopy, which is inserting a tube down your throat and looking in the stomach and into the duodenum and possibly biopsy the duodenum to rule out Celiac disease, and finally, a colonoscopy to rule out cancer and inflammatory bowel disease.
In terms of endometriosis and IBS this was actually a very easy talk to do because there really is not very much in the literature. When you look at endometriosis articles in the PUB Med, which is the resource that tells you every article that has been published on certain areas, there are about 20,000 articles on endometriosis. When you look at IBS there are a little over 8,000. When you look at endometriosis and IBS there are 40 of which I thought five had anything relevant. So there really was not very much to summarize.
The first study looked at patients with endometriosis undergoing laparoscopy. They confirmed endometriosis in about 85 percent of those women and 90 percent of them had some bowel symptoms. You can see how easy it is for them to get steered in the wrong direction of IBS. They actually found direct involvement in only eight percent of patients so there are other things going on like the peritoneal fluid, inflammatory mediators which are probably having something from the endometriosis secreted into that tissue, which is affecting the bowel. Basically the conclusion was that bowel symptoms are very common but it does not mean that bowel involvement is there all the time.
The next study was Ballard, they looked at about 5500 patients and they were looking for symptoms associated with endometriosis. Of course they had all the classical symptoms of endometriosis but they were much more likely to be diagnosed with IBS or PID or Pelvic Inflammatory disease as well. Even after diagnosis with endometriosis they are still two to three times more likely to be diagnosed with IBS, even after they have been confirmed to have diagnosis. That probably has to do with the fact that more often than not their endometriosis was not treated properly.
Finally, one group looked at rectovaginal endometriosis or endometriosis in between the rectum and the vagina, which is more likely associated with deep disease of the bowel. They found that painful bowel movements were very likely to be predictive of endometriosis involving the bowel. As well, apareunia or avoiding intercourse was very likely because if there is endometriosis of the rectovaginal septum it is going to cause a lot of pain with intercourse as well. Finally, nausea and bloating were also very common. Basically they concluded that yes, the symptoms of IBS are very common in women with endometriosis.
In terms of looking at colonoscopy, colonoscopy basically is taking a flexible tube, inserting it through the anus and looking all the way through the large bowel in to where the small bowel joins the large bowel. Findings suggest that endometriosis include a tortuous bowel or a bowel that they have a hard time getting through. That suggests either adhesions or invasive disease. Unfortunately colonoscopy is very, very poor at picking up endometriosis on the bowel. If you look at all the patients with endometriosis on the bowel, which probably makes up around 20 or 30 percent of patients, they cannot see the superficial disease which occurs probably 90 percent of the time. Invasive disease is probably only picked up five or ten percent of the time. Colonoscopy is a very, very poor tool at picking outpatients who have endometriosis in the bowel. Most of the time they will have nothing and then they will get diagnosed with IBS.
Other tests, CT-scan, MRIs - they are not very accurate unless you have big bulky disease, which most women do not have. Virtual colonoscopy is a newer technique which looks at, it is actually doing a CT-scan with patients who have had a certain bowel prep. They can actually pick up the endometriosis or pathology of all in the bowel, probably over 90 percent of the time. But unfortunately it is very new technology, which probably only a few centers in the US have. And, finally, transvaginal ultrasound after an enema is very sensitive but there are very few places that are trained to do it in the US. Dr. Abrao who is going to be talking tomorrow, his center does it, but again, there are very few centers in the US that deal with it.
The gold standard is laparoscopy. That is the only way to make sure you have it all. The gold standard of laparoscopy is when you actually go in and excise all the disease instead of treating it superficially. When it is excised properly the chances of the endometriosis recurring are very small and the chances of being pain free indefinitely are over 80 to 85 percent. Unfortunately most gynecologists do not excise disease. They go at it and try to destroy it. When that is done there is a very, very high chance of it coming back, as much as 80 percent within two years.
This is looking at some slides. This is the appendix right here. This is the tip, you can see the tip is swollen here and then there is actually scarring between the tip and the rest of the appendix. This is small bowel endometriosis, which is probably similar to what Lizzie had. You see some lesions here, here, here and there is actually some narrowing of the bowel. See how the bowel has been kind of kink in this area and that is suggestive of invasive bowel disease. This is endometriosis involving the large bowel. Here we have...side of the rectum. You can see how the bowel is being...or tethered up here to the uterosacral ligament behind the uterus. This is as we are working, probing the rectum. We have made an incision around the nodule and we basically completely excise it. Here we are just about to finish excising that nodule and then that is the specimen itself. There is a little bit of thin bowel so we reinforced it with some sutures.
This is a more advanced case in which we have already done the bowel resection because the endometriosis that caused the narrowing of her bowel and subsequently we had to cut out that piece of bowel that was involved and reconnect the bowel. This is that part we saw before. This is the other part of the bowel of which both parts are now healthy. They have been reconnected with a stapling device and all the other endometriosis present in the pelvis has been completely removed.
This is the same patient's pathology. You can see here is the normal thickness of bowel, which is about four millimeters. You can see this area of the bowel where the endometriosis has invaded, it is about two or three times as thick as it normally should be. You can see here is what the normal opening of the bowel should be. You can see that this one is probably about, once it is brought back together, maybe a third or a half as wide as it should be. You can see why people would have a lot of constipation; anything trying to come through there would be very painful. The normal bowel stretches a lot. Bowel with endometriosis is hard it does not stretch as much. Again, that is another source of the pain that these people are going to be experiencing.
Just some numbers: It probably occurs between 15 and 20 percent of patients overall. Most of that is not invasive. In our experience we probably have 20 percent of our patients with some sort of involvement of the bowel whether it is bowel being scarred to the back of the uterus with some superficial disease and only about four to five percent of our overall patients, or around 20 percent of them that have endometriosis on the bowel will require a bowel resection. Most of it is in the pelvis or in the area just above the vagina called rectovaginal or sigmoid or larger intestine as it is entering the bowel. Ten percent involves small bowel like it did in Lizzie's case. Eighty percent of the patients will have long term improvement in their bowel symptoms whether or not the disease is invasive or not. Actually, in an invasive disease it is probably about 98 or 99 percent will have significant improvement in their symptoms.
When to suspect an invasive endometriosis of the bowel? Well, probably the number one thing is painful bowel movements. When patients are having painful bowel movements that is really the herald that it is probably either adhesions involving the bowel, where the bowel has been kinked and has to go through a narrowing; or there is actually invasive disease which is causing a narrowing as well. Alternating constipation and diarrhea is a very common symptom as well. What happens is patients will often have a hard time having a bowel movement for several days or even weeks in some situations. Then, when they finally do have a bowel movement they tend to almost have a reflex diarrhea where they tend to clear out whatever is in their bowel above the obstruction. Intestinal cramping and bloating are very common and sometimes that can be a little bit more suggestive of small bowel disease if they are having localized pain like Lizzie was because often they will have right lower quadrant pain, which is very close to the appendix. That is where the small bowel joins the large bowel so they will have other symptoms like that which are a little bit more related to the small bowel.
Blood in the stool: A lot of patients will say they have blood in their stool. Sometimes that can be because of constipation and hemorrhoids, which they may not see because they are internal. If it is bright red blood it is usually associated with hemorrhoids but if it is old, dark brown blood or it is very mucousy, again, that would suggest invasive disease of the bowel. If a doctor is doing a rectovaginal exam or examining the patient deeply into the higher part of the vagina on the back wall, they may feel a mass which is also suggestive of endometriosis involving the bowel.
These are some important questions to ask your gynecologist in general and then specifically with regard to bowel symptoms. The most important thing is how are they going to treat the disease? There are many ways to excise endometriosis; you can use cold scissors like Dr. Seckin, you can use a laser as a cutting tool, not to destroy it but to actually cut up the disease. You can use monopolar energy, which is basically using an electrical energy as a cutting tool. Then there are other forms of energy as well. The bottom line is do they excise or do they treat it superficially? That is a huge difference in terms of outcomes. Excision is much better.
What if they found endometriosis on the bowel? Are they going to treat it? Most gynecologists would say probably not because if they are using some form of energy to destroy the endometriosis they are worried about actually injuring the back, so they are not going to even touch it. Have they ever treated or seen invasive bowel endometriosis? Again, most are going to say no. It is going to be something that they are going to move on. If you are seeing someone and they are not giving you the right answers then it may be time to see someone who is a specialist in endometriosis. And, what would they do if they found an obliterated cul-de-sac or invasive endometriosis? Obliterated cul-de-sac is where the bowel is stuck to the back of the uterus, which is probably found in around 20 to 30 percent of patients. Again, most gynecologists feel very apprehensive about treating that because they are worried about getting into the bowel and what would they do if they did that? Because they do not routinely do that they are going to be apprehensive. Fortunately, it can be treated well and all the anatomy restored to normal in an expert's hands.
You do not want them to feel like this, you do not want them to say, "Well, I'll deal with it when I get there" because you want someone who is experienced to do that. Bowel complications can be very high in inexperienced hands and they are probably not going to get rid of all the disease.
Thank you. I would like to acknowledge Dr. Harry Reich who was one of the pioneers of endometriosis surgery, and has actually done some procedures which we adopt ourselves, like doing segmental resections with just a stapling device. [Harry would you stand up.] He was one of the definite pioneers in endometriosis surgery. Had it not been for his foresight we probably would not be as advanced as we are today.