Sonya
Thursday, August 23, 2007

Interstial Cystitis

I have had Interstitial Cystitis (IC) for 8 years. It is a devastating and painful bladder disorder, where the lining of the bladder has worn away and does not repair itself. The pain I suffer can be unbearable sometimes. For the first 6 years that I had this disorder, I was lead to believe that I had to suffer; and I often did. I visit the emergency room at least 20 times of year because my pain is left untreated. Could you imagine holding your urine all day just to avoid pain? How about using the bathroom 50-80 times a day because your urine is painful in your bladder?

I face this everyday. Each day I play the guessing game, wondering how my bladder will feel after I use the bathroom. The pain can be spasmodic and burning, almost like a knife in my bladder. One day a found a doctor who understood me, and gave my a prescription for opioid medication. It was a dream for me. For the first time in years I was able to live my life without having to stop my day due to pain. I was able to urinate without the worry of the horrible pain. Just a small amount did wonders for me.

My pain is not everyday, and I can go months without any severe pain. I also have flares that can last weeks. If I get a urinary tract infection, forget it! I'm in the hospital. My dream doctor was great until I had a bladder infection. I could barely walk. I diminished my medication quickly, and needed more, but my doctor was not available. Because I was under an opioid contract, I could not be treated with opioids from anybody but her. I began to go crazy. The pain was more than I could handle, but my doctor ignored me. I went to the office to demand to be seen; my husband had to carry me in! My doctor refused to see me and accused me of "having a problem". I never once violated my opioid contract. I gave weekly urine and blood samples to check for signs of abuse. They always came back fine. I was always extremely responsible when it came to the decision of whether or not to take medication, or wait it out(which can take 3-6 hours). I kept pain logs and everything.

That was a year ago. I have been in pain ever since. My wonderful life, that I had rediscovered, was gone. I have been to countless doctors and even pain clinics; no one will treat my pain. Even with all my medications and therapies that are available, there are still going to be times when none of that will work. I will need an opioid to continue my day.

I cry right now as I type this, because I feel so alone. I miss living my life. I am only 30 years old. The best urologists in this country treat patients with this disorder with a combination of usual medication, therapies AND opioids. There is no way around it, but with proper monitoring, opioids can give back my life. People with this disorder are often deemed addicts. It is truly sad. People with cancer get to have opioids, but we cannot. No one cares about my pain and suffering. Who could live like this?