My IC Story

After reading through some posts, I decided to share my story. My name is Shawna and I am 30. I have had IC for 12 years, diagnosed 9 years ago. I guess it all began right before I graduated high school in my senior year. I got a UTI, bladder infection, and kidney infection at the same time. It was horrible. I took the antibiotics, but the pain never went away. Literally, three days after I graduated high school I woke up and could not urinate. It would not flow no matter what I did. I knew I had to, I always do when I wake up. It frightened me, because I did not know what was going on. I kept trying to go, but could not. I eventually just went to work, but the bladder kept filling up and I still could not go. The pressure and pain was insane. I left work half way through my shift to go to the er. At this point, it had been over twelve hours since I had gotten up. The er staff treated me very badly. They told me to “just go” If I could, I would. I tried there, but still nothing. They ended up cathing me, and that is when they finally believed that I could not go. The catheter hurt bad, but I needed to drain my bladder. They er staff told me with as full as my bladder was, they were surprised it had not ruptured. I was officially scared. They sent me home with a referral to a urologist because they thought I might just have had a blockage. They uro ran several tests. Said nothing was wrong, but I still could not urinate. They inserted a new cath. I kept going back hoping for an answer. I was young, and was supposed to be starting college. The uro ran scans, did cultures, but came up with nothing. His partner, another uro in that office, told me that I was wasting their time and that I was making this up. They told me it was all in my head, and said I should see a shrink, because obviously I had problems with reality. I was furious. Six months later, and after another uro, I finally was able to urinate one day. They kept trying to uncath me and trying to see if I could go. It just started back up as quickly as it stopped. But, then I had severe bladder spasms. That uro still did not know what was wrong with me. He treated the spasms, pain, and frequency as much as he could, but that was it-just treating the symptoms and not knowing what was causing it. I struggled to work, dropped out of college, and moved back in with my mom. I started to get the symptoms under control, but it seemed as they would just come back at random times and I did not know why. In 2005, my mom read an article about IC. She called me and said she knew what was wrong with me. I cried hard- really hard. I found a new uro- told him my story and all the symptoms and he believed me about the IC diagnosis. I was not crazy or making anything up-nor did I need to see a shrink! He explained that he would need to do a cystoscopy in order to diagnosis me, and when they did IC was officially found. I was happy for a diagnosis, but sad that I would struggle with this forever. I changed my diet, did some hydros in the office and under surgery, and tried all the different meds. Nothing worked. Presently, I use Prelief and Azo over the counter. I still have pain and urgency, but the frequency has reduced over time. It may be due to changing my diet. I noticed a change in that right away. I havebeen in “remission” for a few years, but do have small flare ups. I have been able to reduce my pain levels, and mostly can control the pain with Azo. I guess I am one of the “lucky IC-ers” I struggle with other medical issues as well as IC and notice that they can affect IC alot. I do not look forward to my IC coming out of remission, because the pain and urgency was so much worse then, but I often wonder if it is in remission because I control it or not? Thank you for allowing me to share my story and listen to yours!



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