Oh my gosh Liz! I would be surprised if anyone here has that. I've been around for over a decade and never recall someone with this. I was not even able to find any info on the net about it. The only uterine fistulas I read about were from the bladder to the uterus. This would have to be Crohn's related I would think, but I honestly don't know.

What are they doing other than antibiotics?

Jan

Lol! Me either, Jan I would have to be the one to break with tradition, right? I went to my PCP today to get a pelvic exam (she said my cervix was irritated and red) and we reviewed the CT. There was a big pocket of air at the top of my uterus where it touches my J-pouch, so we supposed that was the fistula. I'm confused b/c when Dr. Shen saw the MRI he said, "Very subtle change in pouch vaginal fistula." I would think there's a significant difference in the uterus and vagina. I'm so confused.

I'm sure it all depends on what angle the view is on the MRI. Dr. Shen noted there was a subtle change, but probably could not actually see what that was. I suspect that if you had repeat imaging, it would not be so subtle. There have been people here who have had abscesses defy all sorts of imaging and it was not until exploratory surgery that they were able to really see what was going on. Even with the EUA, they only "see" what is visible within their view, not what is going on inside.

I am so sorry that this just seems to be getting worse and worse. I wish I had something good to tell you. I guess the one good thing, is that this would explain why your symptoms are not the same as others with R/V fistulas. But, an explanation is not as good as finding out this is an easy-peasy issue, or even one that has a lot of documentation. I think you need to contact Dr. Shen and tell him that they may want a GYN specialist in on the EUA.

Jan