Interstitial Cystitis

[livingwith]

My name is Missie. I am desperate to find someone to talk to that suffers from IC. I have been diagnosed with IC about 6 months ago, after suffering with what I thought were bladder infections for 4 years. The pain is excruciating and no one seems to understand what I go through.
I’ve been taking Elimron for 3 months and… NOTHING! Still suffering. Now I wear diapers when I’m flared up, cause I have to go to the bathroom in excess of 60 times a day! I’ve even started dr...Read the full article

[DMitch]

Hi Missie,

I can completely understand your pain. I was diagnosed with this condition in 1995. This was after many years of testing negative for UTI/Bladder infections. My Dr. referred me to a Urologist. My Dr. performed a Cystoscopy on my bladder and also took a Biopsy to rule out bladder cancer and other diseases of the bladder. We have tried numerous treatments in search of some kind of relief, but have unsuccessful thus far. I had the DMSO/Bladder Instillations done in my Dr. office without the use of anesthesia...this is inhumane! NEVER have this or any other treatment of bladder done without anesthetic! This treatment involved being catheterized while awake, then the bladder is filled with this nitrous oxide solution...the bladder is basically overfilled/stretched.. You lay on each side for 15 minutes each before emptying the bladder. This is the absolute worst pain that I have EVER experienced! Worse than labor! I only took 2-3 treatments before I told my Dr that I was unable to continue. Next was Elmiron...this caused terrible side effects such as really bad heartburn and gas..needless to say this caused much embarrassment. You must take this medication 3-6 months before you will know if its effective or not. I quit after 3-4 short weeks. I also tried Detrol...due to the capacity of my bladder at this time, which is 2-2.5 ounces, this did very little for me. I also used Xanex and currently taking Elavil. They are both antidepressants, but also help with the frequency and the pain, but I fear becoming addicted, so I am apprehensive about prolonged use of these. I have had the bladder distention/stretch every year since I was diagnosed...this provides very temporary relief and the first 2-3 days after the procedure are really bad! You pass blood/blood clots through your urine and that so very painful! I have practically slept on the toilet all night following this procedure because within 5-10 minutes, I am right back up! I am scheduled for another one on Jan 28th. I will seek out another opinion depending on what my Dr. suggests after this procedure. I trust my Urologist and respect him opinion, but I think he is at a complete loss and has no direction to offer me at this point. I am so far beyond needing answers at this point that I am going to seek another opinion just to explore my options. If you have questions, I would certainly welcome the opportunity to answer anything that you would need to know about this condition. My name is Denise, by the way.

[llthomas47]

Denise,

I'm fortunate to have a doctor that understands IC very well. She was diagnosed with a moderate to severe case. The last time I visited her, she told me she had a procedure done (I believe it was a nerve stimulation). If I remember correct, she said wires were inserted in her hip or lower back which is connected to the spine. That's all I remember, but she said that she is 90% better than she was. It's an option you could discuss with your doctor.