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In a bit of a panic...not sure where to turn

First off, let me say that it is not usually like me to get worked up over things, but I can't get this situation out of my mind and I'm not sure what to do, if anything. I'm just looking to let it all out there and see if anyone has any advice. I have posted around the subject several times in the last few months and the story gets kind of long, so please bear with me. I'll try to be as brief as possible.

My husband and I have been trying to conceive for four years now (I'm 39). Our efforts have been hampered by two vaginal fistulas (resulting insurgery) and basically my inability to get pregnant at all.

In April, I finally got off Imuran. My doctor was advising me not to get preganant while on it, but I read that it's safe, so I tried anyway, but I wanted to try and get off of it before seeing a fertility doctor.

Anyway, got off the Imuran, got a clean colonoscopy and began seeing a fertility doctor. Two weeks after my colonoscopy, I noticed a bit of blood in my stool coinciding with my period. I called my GI who dismissed it as being from the biopsy site during the colonoscopy. However, the next month, I noticed even more blood, again coinsiding with my period. I called my GI again and he assured me that it was no big deal. He said it's probably from my running and since my colonoscopy was clean, don't worry about it. I also called my GYN who also blew it off.

My RE (reproductive endocrinologist) was the first to suggest that it could possibly be bowel endometriosis, but was neither interested in confirming this nor doing any thing about it. So I figured that there's nothing to worry about. However, 6 months later, I am noticing a large amount of blood rectally starting the day before my period and lasting about two days. It's large, mucousy clots and long thin strands encasing my stool. I have major cramping around this time too.

My husband and I are now on out 4th month of treatment including two IUIs (interuteral insemination) and still not pregnant. I found an on-line forum with doctor consult and asked him if he thought the bowel endo could be the problem. His response was that, yes it could be, but it is irresponsible for my RE to suggest that I have bowel endo if it was not seen on a colonoscopy. That leaves me wondering where I should go from here.

My RE does not seem interested in doing anything to confirm bowel endo beause it would involve laporascopy and could bring on a Crohn's flare. Also, if it was confirmed, what would we do? Nothing. Unless it was bad enough for a resection, which I would avoid at all costs.

So here I am wondering if bowel endo is cauing my infertility problems, if I even have bowel endo, and if I do, is there anything I should even do about it. The whole thing has me utterly stressed out. And if you actually read all of that, thanks for listening! I would appreciate any advice.
 
Hi Cookie,
I am sorry but I don't have any experience with this problem. However, any form of rectal bleeding is not good, so I would insist that it be investigated by your GI in communication with your RE.

May you soon have answers to this challenging problem.
 
But you still deserve to know, right? I would think about getting a second opinion. Even if you decide not to do anything about it, at least you will understand what is happening with your body. That's important. I really hope that whatever is going on is fixable. I'm so sorry you're going through this!
 
Thanks for your responses. I agree with you Loriebird, I just want to know. That's not asking too much, right? I don't think I want to go through with laporoscopy, but I would like for someone to take me seriously and let me know if there is anything else they can do to figure out what is going on.
I have never had a barium xray. Does anyone know if this is something that might help to find the problem?
 
You certainly need an expert in bowel endometriosis to help you. They may be able to confirm from your description of symptoms alone. It is not usually seen in colonoscopy or barium enema, since it is found on the outside muscular layer mostly. That's why they tend to do a laparascope to have a look, and maybe scrape the bowel if they find any growth. It is a fairly uncommon thing, and not usually causing bleeding... I hope you can get an expert to help.
good luck.
 
It is my understanding that you only see the blood if it has penetrated the bowel, which indicates a pretty advanced stage. But I am also wondering if it could be related to my fitula surgeries. and not endo at all The opening on the vaginal side is closed, but maybe it has tunneled through somewhere higher up . I don't know what to think anymore...
 
Yeah could be - seems more likely. A careful look, via flexible sigmoidoscopy, should find any issues. Is your G.I good?
Hope you can take it easy. Too many things to worry about sometimes. These days I find it necessary to take a slow and steady approach to all things, especially when I'm crook. Not like when I was a young bull charging into everything at high speed!
 
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