Living with Interstitial Cystitis

My story starts Sept. 2006. Typical Monday, felt fine. I went to the bathroom after arriving home from work, the pain hit immediately along with the blood clots. I spent the whole evening sitting in the bathroom. I felt I had a kidney infection, it would pass. I drank cranberry juice, ate yogurt and took AZO for the next few days.

By Thursday, I had a pain develop in my upper right abdomen and it radiated straight through to my back (not wrap around). I finally went to the doctor on the following Monday. I had a bad UTI infection, bacteria was off the charts. So I took the antibiotics, my urine cleared up but the pain did not. After having every CT. MRI IVP, etc, my doctor sent me to a surgeon thinking he could explore further. He sent me to the urologist and GI, they decide to take out my gallbaldder, turns out nothing was wrong with it. At this point the doctor’s have decided that I am just a nutcase who is wanting pain medicine, which makes you feel indignit.

So I wind up in pain management. He wants to back up and re-explore the urinary connection so he sends me back to the urologist who sent me away and said it wasn’t a urinary problem (without any testing), not to come back. Frustrated I searched the website of my insurance provider for help outside my medical community. That was in May this year. I wound up with a urologist that after much testing has determined I have IC He is heavily involved in this condition.

I have had dilation and several DSMO treatments. I had a follow up visit this past Tuesday for a scope to look at the bladder progress and it has remained red/irriated. So, I go back for another procedure in December. All the while, my pain in the abdomen/back persist. My urologist thinks the bladder nerves have been damaged/inflammed from the bacteria that many 14mths ago. He explains that the urinary system develops in the upper region and progesses down which explains the pain in relation to where it is as the nerves develop there. I took the Elmiron and Pamelor for about 2 weeks. The Pamelor made me so tired I couldn’t think straight and the Elmiron made me feel like I had a constant bladder/UTI infection. I intend to give it another try after the procedure.

I guess the thing I learned more than anything was to never ignore something like a bladder/UTI infection, no matter how slight. It has cost me dearly, financially and emotionally. Not to mention the hardship on my family. And on my self esteem as I was ping-ponged from one doctor to the other. The strange thing is that my bladder does seem irriated at times which makes me cramp but isn’t the source of the pain it seems. I do urinate an average of 15-20 times per day but I read other stories and I am not affected by the bladder pain I read so much about. Has anyone ever experienced IC in the way I have?

So in closing, I just want to say that I refuse to give up or allow IC to run my life. I hope if only one person reads this and never allows a bladder or UTI infection to get that far, it helps someone. Please remember that the body’s only way to alert you to a problem is to give you pain, so plese listen to it.