So glad to have found this thread, as I'm in the midst of dealing with my own rv fistula. My doctor told me he sees about 2 of these a year, so it's hard to find anyone who really knows a lot about them. Glad you guys know how awful they are. (But sorry you have to know too)
Did any of you experience cyst like things grow in the area of your fistula? That's what started this whole debacle is these painful "cysts" that sat against my pouch. Gyno took them out/drained them and it must have opened the fistula channel because now I have discharge and cyst things. FUN.
Just wondering if anyone else developed that? I have a seton in place for the time being until inflammation is gone down, then the doctor is going to close it. We shall see how this goes.