Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
so we drove 3+ hours each way to see the ic super specialist in Philadelphia...http://www.pennmedicine.org/wagform/MainPage.aspx?config=provider&P=PP&ID=1182 Dr Phillip Hanno. my Dr was out of ideas and options...after getting there at 1, i finally saw Dr Hanno around 2...he talked to me and looked at all my records and stuff and then he did a pelvic exam which was excruciating...afterwards he gave me the options, which were just what my dr had expected him to suggest...i feel a little like i was eing put off by him, and a little like a guinea pig he wants to test new stuff on...i am supposed to go back to discuss botox injections and the interstim in sept w a diff dr, but i live an hour from Baltimore and Harrisburg, there has to be a dr in one of those larger cities that can do it w/ out making me drive all over the place...that long in the car is killer and that many potty breaks makes the hubby cranky...so not much news to share or new ideas...i am going thur for pelvic floor physical therapy, this seems very invasive and embarrassing, but if it helps i dont care...somethings gotta give...hope everyone else is faring better
I am going to see a specialist in NYC Thursday (I live 30 mins outside Philly.) I FULLY understand the long drives, frequent stops and crankiness. As I understand so far, a cystoscope is the way to fully diagnose IC (I could be wrong, PLEASE correct me if i am!!!) and I am unwilling to subject my body to treatments based on speculation . . . .AGAIN. . . .(happened with endo and Lupron first, then when I had my lap we discovered that I was so "loaded" with growths that the Lupron was an expensive and completely ineffective treatment for that stage, had my dr. at the time bothered to do the lap beforehand) I can't take the physical or emotional toll, I simply don't have that kind of strength right now, and my family at least understands that.
I hope you find relief!! You're in my thoughts and prayers