Hi.
New to forum, hoping to find some others with similar experience to mine, as I'm feeling very pessimistic about chances of success at the moment.
To give some history, I was first diagnosed with a recto-vaginal fistula just over 9 years ago. During the first operation with a General Surgeon they found it was very high up so seton stitch wasn't possible (even though it hadn't shown up on the MRI). I got transferred to CRS after that and they tried a couple of times to fix it (with glue, I think) but it failed. The last time it nearly worked but it opened up after a few days with first BM.
The surgeon at the time said he wanted to transfer me to another CRS who was more specialised (because he feared causing incontinence). So I had an outpatient appointment with the next surgeon and he said that I'd have to have a martius pad graft to repair the fistula and a temporary stoma for 3 months to allow it to heal - all of which is obviously very invasive, so I needed some time to think it over.
In the 4 or 5 year since then other health issues came up that required more immediate attention. But a couple of months ago I finally got to see the second CRS surgeon again and he did a EUA last week.
And now I'm worried - because he couldn't even see that there was a fistula!
I knew the aperture was very small (at the outer end anyway) because the last attempted fix had so nearly worked. But I'm 100% sure that there is still a fistula connection (I can explain how I can tell more graphically for those who want to know).
They want to do an MRI but I have no confidence that it will show what's going on accurately, given my previous experience. What do I do if they just declare it all okay and are not be willing to do anything further? And even if it does show up on the MRI, how is he going to repair it if he couldn't see it during the EUA?
I've had this pain and discomfort for nearly a decade. Now I'm in my late 40s, my sex life is non-existent; any hopes of having a family are gone. I'm so upset at the thought of it never being fixed :'(