At only 19 years old, I have suffered with IC for a little over 3 years now. It seemed to all start suddenly in January of 2002. I spent the night at a friend’s house and woke up early the next morning with horrible pain in my bladder and urethra.
I was terrified, I had no clue what this pain was or what caused it. I immediately called my mom and we set up an appointment with a Urologist. Over the next several months I had plenty more of these painful flare ups. Finally, my Urologist diagnosed me with IC. After many visits, the Urologist seemed to lose interest in my case. I went almost a year without seeing him at one point.
This past August my IC had reached an all time high. I am a junior in college and I got to the point where I missed most of my classes. I stayed home and cried thru the day. I felt hopeless. I didn’t want to go out, I was depressed, I couldn’t eat or sleep. I tried to set up another appointment with my Urologist, but was turned down because I wasn’t a minor (he was a Pediatric Urologist).
Luckily, my boyfriend’s sister-in-law told me about a Urologist she recently met. Immediately I set up an appointment with him and I have been seeing him weekly. After our first visit together he set up a cystoscopy and a hydrodistention. During the follow up visit he told me that I had one of the worst, if not the worst case of IC he had ever seen in his 20 years of experience.
Currently, I am taking Elmiron and Detrol LA and am going thru bladder rehab/therapy weekly. I am on a super strict diet so I can start seeing what foods/fluids affect my IC. The only fluid I can drink is water and the food selection I can choose from is horrible. I am 5′ 8″ and naturally thin, but since August I have gone from 120lbs to 105lbs.
I am ready to be healthy and pain free. There hasn’t been a day I can remember in the past 3 years where I haven’t been in pain. I’m scared. I am scared about my future, about my future husband, and my career. I am so scared to even think about having children someday. I can’t go half a day without a pain killer, let alone go 9 months. I am scared I won’t get better and I will always be the girl who makes plans and has to cancel because she is sick.
Although right now I am struggling and it is hard for me to do normal things people take for granted, I keep trying to think positive. I have a wonderful family and a great boyfriend. They are all understanding and help any way they can. I just pray that God heals me or gives the power to some doctor to do so. I have so much respect for everyone with IC, especially parents. I can’t imagine having IC and having to take care of a child. That is where I am finding my inspiration. I have been reading stories on this website for a while now, and the stories I have read are amazing. Thank you for sharing them. I am constantly praying for you all and everyone with IC. Hopefully someday there will be a cure, but until then, stay strong and have faith.
Brigette
