demi
03-23-2005, 08:04 AM
ok--here goes a long post because I figure its better to get the whole picture instead of bits and pieces at a time so please forgive the length of my story:( I have had frequency my entire life. 20-30 times a day sometimes. I have to carry a cup in my car because sometimes I cant even make it to the bus stop for my kids! I never had bladder pain until a couple of years ago when I started a medication and right away my bladder reacted to it. Nothing else seemed to bother my bladder including food except whenever I took a medication. Finally Tylenol and advil and claritan hurt me too. I had a hydro done a year ago just to diagnose me and like I posted--there were some hemmorages and inflamation. I was fine for a year without medications or diet for my IC but continued with my frequency which I was used to after 36 years. In September the pain in my bladder that feels like someone took it out and beat it up and slashed it with glass and put it back started and it has yet to leave me. I had the hydro and the findings were fine. The procedure didnt help this time though and I had DSMO treatments that didnt help either. I cannot tolerate Elmiron or Elavil and most narcotics except I have tried Ultram 2 times a day and it helps somewhat.I have every symptom of IC just not with the findings on hydro this time. I traveled to see Dr. Moldwin in New York and he said that I have IC and maybe some pelvic floor dysfunction and tried the Valium which made my bladder WORSE and I tried Hydroxyzine which gave me hives. Dr. moldwin wants me to try Pamelor now(he says that it has less side effects than Elavil) . I am just in agony all the time and spend most of my days crying in pain while trying to be a mom to 3 wonderful kids. I just dont get this disease especially if they cant actually see it but my point is... I think thewre are alot of other people that have IC even though upon hydrodistension--it cannot be found.