Hi there once again.
Well, I had a request to do a little review of endometriosis of the bowel. Bowel endo is actually more common than one might think, with over 25% of our patients here in Bend having intestinal endometriosis. That number is most likely higher than the general population, as our patients typically have more severe disease than what the average gynecologist sees. Most doctors aren't familiar with the treatment for bowel endo, so these patients tend to float around from doctor to doctor looking for someone who can help them. Unfortunately, usually nobody has until they get to us.
The most common site of intestinal endometriosis is the sigmoid colon, the portion just above the rectum that lies on the left side just beneath the left hip bone. Following that, the rectum (behind the vagina and cervix) is next, then the last part of the small bowel, appendix, and cecum (beginning of the large intestine). Some patients have bowel disease in more than one location, and it is often associated with ovarian endometriomas (also called "chocolate cysts"). (as we said in Med school, "there goes another food group....")
If the lesion is of sufficient depth, endo of the sigmoid and rectum will cause pain with bowel movements (sigmoid - left lower quadrant pain, rectum - midline pain right where the lesion is). Most of the time these will hurt all month but can get worse during the menses, and rarely (if the lining or mucosa is involved) they can cause rectal bleeding during menses. Some women have diarrhea, constipation, or both in an alternating fashion, but these symptoms alone do not necessarily indicate bowel involvement as they can be seen in those with pelvic (non-bowel) endo as well. Endometriosis of the appendix, cecum, and ileum tend not to cause pain, but in rare cases if the lesion is large enough obstructive symptoms (nausea, vomiting, intermittent crampy pain) can occur.
Why can't some cases of bowel endo get diagnosed? Doctors of old had very few "tests" to do (x-rays, lab studies), so they had to rely on their ability to ask the right questions, listen to what the patient was telling them, and gather the data they needed by their 5 senses. Nowadays, since the advent of CT scans, MRIs, Nuclear medicine scans and the like, plus the atmosphere of "defensive medicine", most docs have lost at least some of the old-fashioned ability to make a diagnosis with their brain, eyes, ears, and their own 2 hands. Imaging studies are notoriously poor at finding endometriosis (with the exception of endometriomas), so in order to diagnose it, one must have a strong suspicion from the history and the physical exam. Rectal nodules can usually be felt on exam and are exquisitely tender, reproducing the defecatory pain, but nodules of the sigmoid colon or higher oftentimes cannot be palpated. Disease is then confirmed by surgery where the surgeon sees the lesions, then by biopsy where the pathologist verifies the lesion to actually be endo and not an imposter. If the surgeon doesn't routinely look at or think about the bowel as many GYNs do (or don't), even at surgery lesions on the bowel can be missed. For those docs who don't trust their own suspicions as much as they trust a CT scan, bowel endo will be missed because it usually doesn't show up on ultrasound, CT, MRI, or most other imaging study. Once in a while if the lesion is large and the radiologist knows what to look for these lesions can be seen, but not commonly. Colonoscopy and flexible sigmoidoscopy (a "mini-colonoscopy" where only the rectum and sigmoid are inspected) typically do not reveal endometriosis either, so unless one is both familiar with and suspicious of bowel endo, it likely will go undiagnosed.
What can be done for bowel endo? The good news is that most patients who undergo surgery to remove the lesion have excellent, long-lasting pain relief. The bad news is that these lesions (even when they are diagnosed) are typically not removed by gynecologists because most don't operate on the bowel. Some patients are referred to general surgeons for treatment, but most are placed on Lupron for suppression, even though it has never been proven to work for this type of lesion. When Dr. Redwine and I remove bowel lesions, most of the time the lesion can be removed by either a partial thickness or full thickness resection of a disc-shaped area, then the hole is sutured closed in layers. This is almost always done laparoscopically, and most patients go home within 24 hours of surgery. Sometimes if the lesion is very large or more circumferential, a segmental resection must be done. This involves removing a whole segment of bowel, sometimes up to a foot in length, then reattaching it using a stapling device. Because of the larger dissection involved and the longer operating time, these types of procedures will usually require a 3-4 day stay in the hospital to allow for normal bowel function to return, marked by the passage of gas (flatus is the $10 medical term). The irony is that these patients very often have immediate pain relief, and when they wake up from anesthesia they can tell that that deep, burning, agonizing pain they've been living with for years is gone. Their postop pain is usually nothing compared to what they've been dealing with preop, and it has been my experience that these ladies are the happiest patients of all. In fact, for both Dr. Redwine and myself, seeing these women pain free for the first time in years is our reward for the physical challenge of a long, demanding surgery. Long-term results of these surgeries are excellent with about 80% cured at 5 years, and fertility rates above 40% (not perfect, but much better than preop).
Our experience thus far has been to operate on almost 800 cases of bowel endometriosis, and to be honest, it is my favorite type of patient to take care of. The surgery is challenging, fun, and satisfying because these women do so well, both in terms of their immediate postop course and their long-term pain relief.
I hope this helps those of you who see a little of yourselves in the above descriptions, and I wish you the best in dealing with your disease. Remember, I'm doing free record reviews through the end of March, so if you think this might be you but you're not sure, don't hesitate to contact us. I'm really not typically into self-promotion, but in this case, I have to because not very many other docs in this country do this well, and I have to say, David's the best. And I'm getting there. Let me know what other topics you're interested in.
Take care, and have a great week.
Dr. Mos
Tuesday, March 06, 2007
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8 comments:
Dr. Mo,
Thank you so much for going through that topic. It only confirms to me that I need to quickly get my records to you, continue to fight my health insurance company, and put an end to this Endo once and for all! You have given me a ray of hope!
Great topic!! You just described me to a T. I just had surgery with Dr. Robbins and Dr. Roberts in Maine on February 9th. And, although I had complications which put me back in surgery 2 days later and cost me 12 days in the hospital, I wouldn't change a thing. I am more than pleased and satisfied with the results of my endo excision and bowel resection. I'm so excited that there's another doctor out there willing to learn these skills and from the best no less! I personally want to say THANK YOU for what you're doing, what you will do, how you're going to change the world! ;-)
I would advise every woman with endo to run as fast as they can to any one of the top endo excision specialists in the country. It's the only wise choice. It took me 11 years, 4 unsuccessful surgeries, 3 rounds of Lupron, and many years of Pain Management (when they was "nothing else they could do for me") to finally decide to go to specialist. I would love to prevent other sufferers from going through the same thing. All I can do is share my personal story with as many people as I can and hope they see the light.
Thanks again, doc. Aloha!
I am 24 years old and have been told by many OB/GYN's in LA as well as here in Bend that my pelvic pain is nothing or that it is nothing that can be solved. I have had 2 lap ovarian cystectomies and have tried most BCP's in a plea to stop the stabbing pain and endless burning that I feel daily. One GYN told me I needed to have more intercourse.... haahaa are you kidding me - thats out of the question. I have searched the we over for a clue to what might be wrong and your description fits almost perfectly... thanks, I'll see you soon.
~ screaming in pain, Bend OR
Hi Dr. Mo..
I have a suggestion for your next topic..PLEASE..I would like to know about endometriosis and why women (including myself) get fevers? I have low grade fevers all the time...I would also like to hear about endo and the immune system..I seem to be sick alot..and have terrible fatigue..
Fatigue and endo would be good, too
Thanks!
OK, I see HadleyCat and Miss Nikiquik on here. The Northeast Jeep Girlz Brigade has made it out West!
To Dr Mo - I read your blog on bowel endo. I am one of those "happiest patients of all", having had surgery one year ago in Maine, which included a resection.
I was frightened out of my mind prior to surgery, I wanted to be knocked out weeks in advance! Now, well, what was I worried about?! I do wonder what my life would have been like if I had not had endo. I am very active (hiking, biking, motorcycling, kayaking, backpacking, sports, referee) and I did all these things despite the condition, which, btw, I never knew I had, just that I felt miserable. So, I don't think I missed out on much, just that it might have all been a little easier, "she said, as she unbuckled the hip belt on the backpack and grabbed a rock for self-arrest, just in case she lost her footing on the glacier." HATED THAT!
Hey, I'm going to Hawaii in one week, never been there, hope I see whales, and get to kayak as well. At work they said they might cancel vacations. I told them I'd be selling pineapples and coconuts, then, in Hawaii, cuz I'm GOING.
YAKKIN, satisfied, thankful, and eternally grateful endo excision patient
I believe I have bowel endo but my doctor and so far none of my research actually tells you what the symtoms are like...what kind of bleeding is it? Right now once a month for a few days before my period I have bleeding with bowel movements only. A TON of blood in my opinion drips out and the feces is covered in blood. Dark and fresh blood mixed.
Rectal nodules rarely cause bleeding, maybe 5% of the time. Most women with endometriosis of the rectum have pain with their bowel movements all month that can get worse with their menses. These lesions usually stay within the muscular layers of the bowel wall and don't invade into the mucosa, or lining of the bowel. In the small percentage of women who do have mucosal involvement, then you can have bleeding with bowel movements around the time of your period. If this happens every month, then it's a pretty good sign that you're one of the few with this type of endo. The pain from these nodules tends to be a combination of burning/aching with occasional stabbing pains like someone is sticking a knife up your butt (blunt but descriptive.)
You probably should have a colonoscopy to make sure there's not something else causing the bleeding(like cancer or a polyp), but it sounds like endo to me. The only treatment that works on these deep nodules is to remove them. Depending on the size and location of the nodule, sometimes they can be relatively easy to remove and do a simple repair of the hole that's left in the bowel after removing it, and sometimes they require a segmental resection, which is where a longer piece of bowel is removed and the entire circumference put back together. The segmental resections take a few days longer to recover from, but in both cases, they are incredibly effective for pain relief.
Best of luck to you, and if you want I'll look over your records for you and give you some more detailed feedback.
Dr. Mos
Dr. Mos -
Great information. Thank you for your "blunt" description of the rectal pain - being like a knife up the butt. I had said that to more than one Dr in the past - and only got strange looks. After seeing a small amount of red blood for 5 months - only during my period - I finally got someone to check me a bit more. This confirmed that I did have endo - confirmed by biopsy on ovaries and on sigmoid colon. The Dr. cleared all she saw - 1 year ago - during that laparoscopy. I was treated for 6 months with GnRH without add back therapy. I became 37 again (came out of the menopause) this past December. I have now had 4 cycles - with the last 2 being as bad as prior to first surgery as far as pain and such. Began having bladder symptoms only during cycle. Went back 1 week ago - and have 10 cm cyst on L ovary, indications of small amount of blockage on L ureter without any stones seen. They also suspect a nodule on/in bladder due to blood in urine, bladder spasms and such. I am an American - but live in a larger city in E Africa. I will be coming to states in the next weeks to have a hysterectomy. I will be leaving family here to have it done - and will need it all to move as quickly as possible. Where are the best places to go for this type of treatment? I have been told that I need a team to cover bladder, colon/intestines and GYN. Thanks for your input!
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