Endo of the Bowel

Jane0103

I had a colonoscopy last week (like sticking things up one hole isn't enough?) and was dx with moderate to severe endometriosis of the bowel.  We are currently doing IVF (I start meds on Sat), but the doctor mentioned that if we weren't sucessful that I look into having surgery to remove the endo.  She also mentioned that with all the extra estrogen, I can probably expect some flair up while on the meds (fun!).  So, does anybody else have this?  Did you notice an increase in symptoms while stimming?  Have you had surgery to remove (details please)?

TIA

LCB34

I have endo on my ovaries, tubes, uterus, bladder, and bowels.  Per my RE, unless your endo is on your reproductive organs (ovaries, tubes, uterus) it will not impact your chances of conceiving - especially via IVF.

I did not have an increase in symptoms while stimming - I just don't produce a lot of follicles/ mature eggs due to the endo in my ovaries.

When I had my lap back in 2008 they would not touch the endo on my bowels.  Not many surgeons will actually remove anything  from your bowels b/c the risk of perforation and subsequent infection outweighs the benefit of removing the endo. 

There are only 1-2 surgeons here in Houston that will touch the endo no my bowels so, when I have my next surgery, one of them will scrub in to work solely on the bowels

Good luck!

 

marsht

They found severe endometriosis in my bowels about 13 years ago and had surgery to remove it since it had fused my appendix and bowels together. I ended up losing some of my bowels in the process, but since you have miles of them every thing still works as it should. The surgery was done through a lap and the recovery was ok, just no food and limited liquids for 72 hours.  I felt a million times better after. Good luck!

 

Jane0103

LOL, evidently I also have a redundent bowel, which means I have extra!  Taking it out shouldn't hurt anything!  I had a lap in Dec with VERY minimal endo on ovaries that was sucessfully removed.  I had just started noticing bowel symptoms right before, so was "assuming" this was fixed.  Ummm, WRONG.  Evidently the endo in the bowel was so bad, I woke up mid-scopy and they had to sedate me again.  I took them almost an hour.  My symptoms do seem to be progressing fairly quickly, but I guess we'll just wait it out and see.  One cycle at a time . . .

schoolsoutbride

LCB34:

I have endo on my ovaries, tubes, uterus, bladder, and bowels.  Per my RE, unless your endo is on your reproductive organs (ovaries, tubes, uterus) it will not impact your chances of conceiving - especially via IVF.

I don't think all REs are this conclusive.  Endo can have hormonal effects and it's not fully understood.  IVF will bypass any blockage, but not necessarily fix everything else.

Mine wasn't on my bowel, but I've heard the same thing about them risks out weighing the benefits.

c1311

I have endo of the bowel as well.  I have done two IVFs (one just to freeze so not a full cycle) and while stimming didn't really bother it, I did notice that my symptoms during my periods after IVF were worse than before.  Of course this could be because of the progressive nature of endo, but I suspect it is hormone related.  I've never had surgery to remove it, but I do know a of a couple gals who have had a bowel resection to remove it.  

My RE is a big believer in the treating the immune component of endo during IVF.  He has done some pretty convincing studies that show that treatment of elevated natural killer cells and the treatment of those testing positive for certain antiphospholipid antibodies does improve IVF success rates for endo patients. The idea is that endo as an autoimmune disease and getting the immune system in proper working order helps with implantation.

Best wishes! 

missred75

I don't know if I had/have this or not. When I had my myomectomy in September, they found a tumor in my colon. After they removed it, they determined it was endometrial tissue, but it was on the internal lining of the tissue (not the outside next to my organs, and not the inside where the poop goes, but in between both of those).

They said they'd never seen it before, and that it had probably been there my whole life and just gotten aggravated with the more menstrual cycles I had.

Now I'm concerned that there's more to it?

c1311

missred75:

I don't know if I had/have this or not. When I had my myomectomy in September, they found a tumor in my colon. After they removed it, they determined it was endometrial tissue, but it was on the internal lining of the tissue (not the outside next to my organs, and not the inside where the poop goes, but in between both of those).

They said they'd never seen it before, and that it had probably been there my whole life and just gotten aggravated with the more menstrual cycles I had.

Now I'm concerned that there's more to it?

Isn't this by definition endo then?  It sounds like it formed a chocolate cyst from being "activated" with each period.  I had endometrial tissue inside my ovary.  Who knows how it got inside the ovary, but it caused an endometrioma that got larger each cycle until I had it removed. 

missred75

c1311:

missred75:

I don't know if I had/have this or not. When I had my myomectomy in September, they found a tumor in my colon. After they removed it, they determined it was endometrial tissue, but it was on the internal lining of the tissue (not the outside next to my organs, and not the inside where the poop goes, but in between both of those).

They said they'd never seen it before, and that it had probably been there my whole life and just gotten aggravated with the more menstrual cycles I had.

Now I'm concerned that there's more to it?

Isn't this by definition endo then?  It sounds like it formed a chocolate cyst from being "activated" with each period.  I had endometrial tissue inside my ovary.  Who knows how it got inside the ovary, but it caused an endometrioma that got larger each cycle until I had it removed. 

I don't know. They said I didn't have endo, and that was the only part they saw. (He had me wide open, so I would hope he would've seen it elsewhere if it was there.) They called it an endometrioma, though.

c1311

missred75:

c1311:

missred75:

I don't know if I had/have this or not. When I had my myomectomy in September, they found a tumor in my colon. After they removed it, they determined it was endometrial tissue, but it was on the internal lining of the tissue (not the outside next to my organs, and not the inside where the poop goes, but in between both of those).

They said they'd never seen it before, and that it had probably been there my whole life and just gotten aggravated with the more menstrual cycles I had.

Now I'm concerned that there's more to it?

Isn't this by definition endo then?  It sounds like it formed a chocolate cyst from being "activated" with each period.  I had endometrial tissue inside my ovary.  Who knows how it got inside the ovary, but it caused an endometrioma that got larger each cycle until I had it removed. 

I don't know. They said I didn't have endo, and that was the only part they saw. (He had me wide open, so I would hope he would've seen it elsewhere if it was there.) They called it an endometrioma, though.

How odd that he called it an endometrioma, but said you didn't have endo.  Hopefully he's right.  Some endo can only be seen under a microscope though.  I think "new" implants are sometimes clear and darken over time and eventually form scar tissue over them.  The darker spots and the scar tissue is much easier to spot during a lap.  Hopefully you don't have it.  Endo really sucks.