Hey LeeAnn,
I don't know if this will help or not but your pain symptoms sound very familiar. A few years ago I had the same type of pain for what seemed like
forever. Mine started after a few UTIs too. It's really hard to explain how bad it feels.
Anyway, the urologist I went to at the time said I had
neurogenic bladder , which I think was his way of saying......I don't know! He did give me a prescription & I think the name of it was
Urelle. All I remember for sure was I peed blue for a long time. It was the only thing that ever helped at all. You might want to ask you doctor about it.
I don't know if you've been tested for it or not, but has anybody considered it might be a kidney stone. That's what mine turned out to be. My Neuro, PCP & Urologist all thought it was because of MS &
ooops, turned out to be something else. Being a weird person, with a weird disease nobody even considered I might be having weird kidney stone symptoms.
Just a thought.....don't know if it applies to you at all, but ya never know. And, dang it, I sure hope you get some relief soon. Constant pain is just drains you.