I have been diagnosed for over 12 years and it causes pain unlike anything I have ever experienced. It is by far the worst pain issue I have, and I have alot of things going on. The pain has been described as worse than cancer pain, which I have thankfully not experienced.
I am sending out a plea because I am being treated by a pain management doctor and currently take MS Contin at 60mg twice daily, soma as needed and I am lucky to have a long standing rx for lorazepam, which I can put under my tongue when I am near to collapsing fro the pain. I am going to finally switch to Opana ER next month, and I'm hoping it provides more relief, as my doctor does not want to increase the morphine dose.
Please help if you can! Many thanks and blessings to all... Beth
Added 28 Aug 2012:
Kim, are you seeing a urologist, or a urogynecologist? With me I kept thinking it was a bladder infection or a UTI, but after many, many tests and cultures, we realized that there was no infection. I had a cystoscopy under general anesthesia, and that' s when I got my IC diagnosis. ind you, this took over 3 years, during which I alienated my wonderful gyn, and pissed off several GPs.
I remember having back pain at times, often severe, but I also have Degenerative Disc disease and a number of other issues. One thing I notice is that the pain and backache get even worse when I'm constipated, and unfortunately I have suffered from chronic constipation since I was a child. Turns out I have a "tortuous" colon, and have to do a 2 day prep when I get colonoscopies. I started getting them in my 40's because my father had colon cancer that he eventually died from.
If you do get a diagnosis of IC they will probably want you to try Elmiron, which is the only approved med for IC. It is supposed to help coat the bladder. I tried ti twice for at least a year both times, and I turned out to be one of the 70% that aren't helped. Also, many doctors will put you on amiltriptaline (SP), and an older allergy medication as IC is known to produce alot of mast cells. Please feel free to contact me anytime.
Best of luck, Beth