Living with Interstitial Cystitis

I have had bladder and urinary symptoms for most of my life and am by no means better today. In fact with every major flare of my so called IC I get worse than before. Over the course of about 20 years I had seen three different urologists who did not understand what was wrong and two of them felt that i was crazy and needed mental health therapy. One of the reasons that my IC was so hard to diagnose was because I had a an autistic spectrum disorder, asperger’s syndrome.

My urinary pain that I felt was something that I was unable to explain and when I did most people just laughed at me and nver took me serious. Teachers thought that I was trying to get out of class and this was so not true. today I really wanna kick those teacher’s buts for not believing me. well finally in 2004 I went to my current gyno and explained every thing to her and she diagnosed me with IC. I am no means better but I am thankful to know what is wrong with me. On top of that another doctor who performed surgery to check for endometriosis found that i had a severe case of it and a thickening of the outside of my bladder. but the inside of my bladder was normal for some reason. i was also told that IC does not always show up during a cytoscopy of any sorts.

i wanna say this to IC patients and parents of children who may have urinary problems. You cannot always take medical advice. If you think that you or your child may have a problem dont be afraid to speak up even if it means seeking different opinions until you find a solid answer for your concerns. Parents also need to inform teachers of a child’s medical condition and make arrangements