intestinal endometriosis

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yori
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Date Joined Jan 2006
Total Posts : 56
   Posted 9/1/2007 12:10 PM (GMT -7)   
Has any one ever heard or been diagnosed with this. Interesting reading. Apparently endometrial tissue can become wrapped around the colon or the small bowel causing narrowing, blockages, pain, bloating, diarrhea and or constipation. When occurring in the small bowel a common site is the illeum. It's called ileal endometriosis.The only way to diagnose is laparoscopy.There have been misdiagnosises of ibs and crohns.

yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 9/1/2007 12:26 PM (GMT -7)   
I had adhesions from previous surgeries that most likely made for a misdiagnosis of crohns. they can do the same thing--cause pain, blockage, etc.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and imipramine...living with pain, but doing ok.


JaSanne
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Date Joined Oct 2006
Total Posts : 2044
   Posted 9/1/2007 12:54 PM (GMT -7)   
I had endometriosis (possibly still could), so yes, I've been aware that endometriosis can affect all the pelvic organs. Mine caused infertility and possibly my miscarriages. Had it lasered once, and later some cauterized from different areas during my hysterectomy. When I had colon surgery, my surgeon found none at that time. I had my ovaries removed because of it, but it can still be active after a hyst. especially with HRT. I still take estrogen, but at a much reduced dosage compared to when I first started it, but so far I've been okay in that area. With a study released this week about estrogen depletion after a hysterectomy being linked to dementia, I now feel validated in taking estrogen. I already have memory problems and don't need more.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


yori
Regular Member


Date Joined Jan 2006
Total Posts : 56
   Posted 9/1/2007 1:41 PM (GMT -7)   
There are a number of cases on pub med of misdiagnosis of crohns due to ileal endometriosis. It says at the conclusion of several of the articles endometriosis of the small bowel should be considered carefully in a differential diagnosis of crohns in female patients.
 
I wish it wouldn't be so hard to diagnose. It would be nice to rule this out but going in with lapraoscopy is pretty invasive isn't it.

brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 9/1/2007 2:24 PM (GMT -7)   
Hi Yori. I've had two laparoscopies done for endometriosis. The first one was about 3 years ago and it was to diagnose me with it. It was my gyno that did that surgery and she removed a fair amount of endometriosis. There was some on my bowel at that time, but my GI doctors didn't think it impacted my GI issues. That wasn't a very bad surgery to recover from since she didn't go after the really tough to reach stuff. It depends on your surgeon really, and what they plan on doing when they are in there. My first one I was up and at it in a day or so. But my second one, I saw a specialist surgeon and he was removing all of the endometriosis he saw. He even removed my appendix. So that took a few weeks to recover from. So really it depends on who is doing the surgery and what they plan to do while they are in there.

In my opinion, if this clears up any treatment issues and can possibly keep you from going on hardcore medicines, it could be worth it. But you really have to know why you're going in there and what you expect out of it. My cramps from my periods are debilitating, so it was always worth it for me to go in and figure stuff out. It's also important to me, because endometriosis can cause infertitility and so I want to give myself the option in the future to decide what I want. So yea, you should talk to your GI doc and your gyno about all of this.

I hope you get things figured out. :)

sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 9/1/2007 5:48 PM (GMT -7)   
I too have HORRIBLE cramps during my period. After my CD dx I talked to my gyno. We decided that having a monthly period would really continue to enhance my CD issues. He thought that it would be best for me to leave the regular BCP behind and go for the 4 periods per year BCP. So far, I have had no problems with the new BCP. I take Seasonique. I still have serious concerns about potential endometriosis. My gyno and I have discussed doing the laproscopic surgery to see if I have endo. He said that he would be willing to do it but that he was nervous due to my gut issues. He was concerned that going in and disturbing my insides may make my CD worse.

Any thoughts on what I should do? Do you think that I should go ahead with trying to find out about the potential for endo or take the gyno's advice and not mess with disturbing my insides?

Currently 3 x per day 1000mgs Pentasa, Aciphex, Lortab, Ambien, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt, back on the prednisone (10mgs this week) and Entocort (9mgs).

Headed back down the CT, SBFT road for a potential SBO.  Great.


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 9/2/2007 4:53 AM (GMT -7)   
I would think that the scopes and other test that see inside things would pretty much tell what is going on. IBS on the other hand is handed over as a DX with no test to determine what is going on inside a person.Are the only way to determine endometriosis is threw lapascopic surgery? lol gail

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/2/2007 8:42 AM (GMT -7)   
I had two laparoscopies last year. hated to go through them, but it helped a lot to find adhesions, and it would be the same with endometriosis. it is a simple surgery and they can often fix things while they are in there. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and imipramine...living with pain, but doing ok.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 9/2/2007 4:06 PM (GMT -7)   
Yori and Sbcgrace, I honestly think it depends on the amount of pain you are in currently. I tried to do the BCP too, even the one that gives you only 4 a year. But my body just loves to have a monthly period, and will do so via breakthrough bleeding if it has to. So that and the pain pills I was on wasn't helping anything. That's why I did my first laparoscopy. Because otherwise they couldn't have put me on the other meds or have removed the endometriosis they found. So it wasn't something I did right away. I waited about 3-4 years before doing it. It was almost like I was out of options and I just needed something to help the pain. I couldn't even get through an exam because it caused so many problems. Basically what I'm saying is if you are in pain then I would go ahead and do it. Otherwise you won't get any relief. Otherwise, it is an unnecessary surgery. They can remove the endometriosis but it will probably come back again. It's not a final solution, it's a step on the way. There are medicines you can take, but they are extreme. So you have to realize that too. I wasn't diagnosed with Crohn's until a month before my second laparoscopy. So if your doctor thinks a laparoscopy could really negatively affect your Crohn's, you might not want to do it. Let me know if you have any other questions.. I will help if I can.

sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 9/3/2007 5:59 PM (GMT -7)   
Brit,
I know this might be a more personal question than you may want to answer but can you explain any other pain issues that you had other than during your period that might point toward endo? For example, I have really bad pain that is pressure-like pain during sex.

Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.

Preparing to start Remicade because I am steroid dependent now.


sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 9/3/2007 6:13 PM (GMT -7)   
Oh, yeah, and it also is very painful sometimes for me to do tampons. Thoughts?

Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.

Preparing to start Remicade because I am steroid dependent now.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 9/3/2007 8:44 PM (GMT -7)   
Well, I can tell you that for me I was never able to use tampons because it was just too painful. But that's just because for me, the endometriosis was like covering everthing inside and pushing things over... my surgeon in April had to move stuff around and prop things back up. So I know that causes problems like that. Which is why I can't get through exams when the endometriosis builds back up. So that might be something that is indicative of endometriosis. It sounds like you are in pain... so I would go ahead with it if your doctor is willing. Keep in mind though that if it's just a gyno doing the surgery, they can't typically remove as much as a specialist surgeon can. But since you haven't been diagnosed yet it might be better to do it through your gyno. I know he said he was worried about messing up the Crohn's stuff, but honestly if you are in pain then it can only help. Hope this helps you make a decision either way. :)

sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 9/4/2007 7:55 PM (GMT -7)   
Thanks Brit!

Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.

Preparing to start Remicade because I am steroid dependent now.

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