gracie55
06-02-2009, 06:19 AM
Hello, I am 27 years old and I was diagnosed with severe IC in 2007. I had a cystoscopy and hydrodistension and the pictures were astounding, my entire bladder is covered with this disease. To make matters worse the doctor said that I have a tiny bladder and it holds half the amount of liquid a normal bladder holds!! I could not believe what I was seeing or hearing when I was told that I have this and all I could do was cry! I have had the disease since I was 16 and it took years to get a diagnosis. I was told I have diabetes, over active bladder, that I am stressed, and crazy! I remeber the day it started, it came out of no where. Intense pain, burning, frequency and urgency and I have never been the same since.
I also have fibromyalgia and IBS. The doctors also believe that I have celiac disease and I am being tested for that!! Trying to not eat anything with gluten is a challenge in itself, and I can't have dairy. Gosh I mine as well just stop eating, lol!! I have not been able to work and I am applying for disability because my doctor has no other help for me! I live in severe pain and go to the bathroom 60-80 times per day.
I do not sleep at night because of the frequency, urgency and pain. I have taken every medication possible for IC and I also have the Interstim implant. Some days I just cry because I cannot believe that this is my life. I see an accupuncturist, therapist and a naturopath. I have tried almost everything including following the IC diet and nothing seems to help at all. I know that all of you are going through the same thing and it is great to have support because without it this would be so much more depressing. I also feel alone, family and friends just do not seem to get it. I really do not have anyone to talk to except for my mom. The other thing that is hard is that I do not look sick and so people do not understand how I could feel so terrible when I look fine!
This disease is very frustrating and scary because there is not a whole lot the doctors can offer especially when you have tried everything and you do not respond to treatments. I have had people say well I go to the bathroom alot too! But what they don't get is that there is so much more involved then just going to the bathroom. The pelvic pain alone is enough to make me want to scream! Forget sex I do not even remember what that is because it is so painful to even think about. I feel so bad for my boyfriend because he gets the brunt of this. I also keep him up at night because I usually cry on the toilet and fall asleep on the toilet because I am so exhausted.
Currently I take lyrica, oxycodone, vicodin, baclofen, pain gel, cymbalta, ph buffer, and maxiflav. The implant is not working at all, I have had it in for 2 months now and I wish I never had it done. But I just thought if there is any chance of being normal again I will take it. I try everything and I will try everything because I want my life back. I can't wait for the day when I can go to the beach again and lay in the sun for more than 10 mins without having to get up and go to the bathroom!!
If anyone has any other advice I would appreciate it so much because I am now hopeless! Thank you so very much/
gracie55:cat:[/SIZE][/FONT][/FONT][/COLOR]
I also have fibromyalgia and IBS. The doctors also believe that I have celiac disease and I am being tested for that!! Trying to not eat anything with gluten is a challenge in itself, and I can't have dairy. Gosh I mine as well just stop eating, lol!! I have not been able to work and I am applying for disability because my doctor has no other help for me! I live in severe pain and go to the bathroom 60-80 times per day.
I do not sleep at night because of the frequency, urgency and pain. I have taken every medication possible for IC and I also have the Interstim implant. Some days I just cry because I cannot believe that this is my life. I see an accupuncturist, therapist and a naturopath. I have tried almost everything including following the IC diet and nothing seems to help at all. I know that all of you are going through the same thing and it is great to have support because without it this would be so much more depressing. I also feel alone, family and friends just do not seem to get it. I really do not have anyone to talk to except for my mom. The other thing that is hard is that I do not look sick and so people do not understand how I could feel so terrible when I look fine!
This disease is very frustrating and scary because there is not a whole lot the doctors can offer especially when you have tried everything and you do not respond to treatments. I have had people say well I go to the bathroom alot too! But what they don't get is that there is so much more involved then just going to the bathroom. The pelvic pain alone is enough to make me want to scream! Forget sex I do not even remember what that is because it is so painful to even think about. I feel so bad for my boyfriend because he gets the brunt of this. I also keep him up at night because I usually cry on the toilet and fall asleep on the toilet because I am so exhausted.
Currently I take lyrica, oxycodone, vicodin, baclofen, pain gel, cymbalta, ph buffer, and maxiflav. The implant is not working at all, I have had it in for 2 months now and I wish I never had it done. But I just thought if there is any chance of being normal again I will take it. I try everything and I will try everything because I want my life back. I can't wait for the day when I can go to the beach again and lay in the sun for more than 10 mins without having to get up and go to the bathroom!!
If anyone has any other advice I would appreciate it so much because I am now hopeless! Thank you so very much/
gracie55:cat:[/SIZE][/FONT][/FONT][/COLOR]