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 :'(

I am so sorry to hear of your long painful fistula history. What a nightmare for you!

If I were you, I would agree to an MRI, just to see if it's got bigger, then if you are still not happy, ask for a second EUA with a different.... Senior..... CRS.

Good luck x

Thanks for replying. Just needed to get it off my chest a bit - this isn't something I talk to anyone about. Ever.

I'm having the MRI next week. What concerns me most is that, even if it shows up on the MRI, then how is he going to fix it if he couldn't even identify it during an EUA?

I've been told that the likelihood of surgery being successful decreases with each attempt so I want to make sure the surgeon is really experienced and knows what they're looking at...which he's supposed to be, but now I'm so concerned. I wouldn't normally presume to know better than an expert but in this case, I'm 100% certain he's wrong.

If anyone has had a diagnosis that they've disagreed with, I'd love to hear what you did about it. And how you found your surgeon in the first place.

The hospital called me today and want me to go in for an MRI after I have found out I now have a fistula.