I was diagnosed with IC nearly 10 years ago and found a uro who did instillations and put me on elmiron. I had to discontinue treatment due to loss if insurance (divorce). I was also diagnosed with FMS,IBS and Mitral Valve Prolapse. I finally have insurance again and was able to see the same Uro. His wife is a ARNP and does my instills and has been wonderful to work with. I have now been on elmiron 100mg 3xday for 11 months....had numerous instills, take hydroxyzine 50mg at night, Cymbalta 60mg at night and hydrocodone 5/350 as needed.
I am still in nearly constant pain in the 6-7 range. My Primary doctor said that the hydrocodone was STRONG and when I told him it didn't work and had recently seen a pain managment doctor who put me on Avinza 60 1 per day he was really irritated. I found that the avinza worked on the IC but all my joints were aching much more than usual and my hands were becoming unusable. I work a 40 plus full time job and have a heating pad at my desk. My Primary doc says I just have to live with the pain and says opiates are reserved for the terminally ill. I wish he could feel what I feel for even an hour and he would realize that IC and FMS pain can be as bad or worse than cancer pain. I am afraid to go back to the pain management doc for fear that it will cause repercussions with the Primary doc and possibly my insurance. My urologist says there is nothing else available and suggests Mayo or Cleveland Clinic. Since there is nothing currently approved for IC treatment I need something to handle the constant pain. When I'm not working I'm home laying in bed with my heating pad drinking as much water as possible. Have cut nearly everything out of my diet that is listed for IC and IBS. The instills only work briefly and I don't want to end up doing them at home 3 x daily. I think a lower dose of a morphine med...not a 24 hour but one I can take as needed is my only solution. My uro and obviously my primary can't/won't give me anything else. Should I go back to the pain doc and find another primary that possibly understands pain? Oh yes, I've also got osteoarthritis but cannot tolerate the meds..makes the pain worse. Also have many of the symptoms of RA but since my sed rate is normal they say I don't have it. I saw a rheumatologist years ago..will try to reconnect with him. I've found that many doctors have never even HEARD of IC let alone understand anything about it. I began treatment for depression back in 1987 after an injury while teaching a dance class. I suffered with constant panic for a year before Workers comp would send me to a psychiatrist. That doctor would treat the anxiety, depression and pain.
I know the laws are so stringent regarding opiates, but chronic pain along with everything else is making my life unbearable. I also guess that the elmiron isn't working... after 11 months with no relief.