Another update. (Jeez, did I start this thread in 2012!? That's depressing.)
Me and my fistula were living life until Sept '16 when I had a catch-up with surgeon (a different one to who I normally see). I described the symptoms and how I was just living with it. He said I was in my 30s and 'living with' something for the next 30-40 years is a long time. I tended to agree!
So I had another EUA last week. I will see surgeon to review findings in a couple of weeks, but reading the post-op report (written mostly in surgeon sanskrit!) this is what it found:
CPAA normal - no stenosis
unable to intubate 'efferent rims' (!?)
biopsies taken - cuff and pouch
inflammation low vagina with some slough and 'cutant bleed' (!?)
on region of (something) vagina (something) to location of CPAA –> healthy thick tissue
no fistula identified
So my stealthy fistula eludes diagnosis once again. Good news, they can't find it then no surgery. Bad news, they can't find it, they can't fix it. Sigh.
If anyone has any questions I should ask the surgeon, that would be helpful.