Ulrika, did you have a cystoscopy with hydrodistension (they put you under for this) or just a regular cystoscopy (generally done in the doctor's office)? It usually takes the hydrodistension to detect IC except in severe cases. I had a cystoscopy in the doctor's office which was completely normal. I found a new urologist who was able to to diagnose me based on previous tests and my symptoms (no cystoscopy with hydrodistension).
Pain in the urethra is not uncommon with IC. My pain with IC is only in my urethra. It is referred pain from the bladder. I also have pain with intercourse.
If you have not already been to the following site, I recommend http://www.ic-network.com. There is plenty of information about IC and related conditions, forums, and even a list of doctors by region who work with IC. It took me three urologists and lots of my own research to get a diagnosis for myself! However, once I got the diagnosis and was put on Elmiron, the IC med (which takes six months to start working), I started feeling much better.
Let me know if you have any more questions. I remember how frustrated I was trying to figure out what was wrong with me, and I'd be happy to help you any way I can.
-------------------- Lisa
IBS-A, Interstitial Cystitis, Migraines
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