Diagnosed 4 years ago

[Laurleen94]

I started having symptoms when I was 17 years old not long after I had my daughter. I lived in PA at the time and every doctor I went to told me nothing was wrong. They would check my urine to see if I had a bladder infection or diabetes and when my urine didn't show anything they would just say I was fine. When I moved to Maryland and started seeing doctor's here the first two I saw wouldn't even do anything. They just let what I said go in one ear and out the other. Finally in 2001 after 6 years of suffering I found a doctor who would listen and he sent me to a urologist. The urologist did some tests and told me I had IC. He put me on Ditropan, Elavil and gave me a prescription for Elmiron but my insurance wouldn't pay for the Elmiron. A few months after the diagnosis I was able to get the Elmiron for free through the company that makes it. I was on it for a year and it worked great but then I was no longer able to get it anymore. Since then I have just been taking Ditropan and Elavil. For two years I was doing okay on those two drugs but last year my symptoms got worse and my doctor recommened a hydrodistention. I figured he is the doctor so he must know what he is doing so I went ahead with it. I had the hydrodistention on January 17th of this year and my symptoms are now worse than what they were before. I am in more pain and I went from peeing 25 times in a 24 hour period to peeing 35-60 times in a 24 hour period. My doctor won't up the Elavil for my pain and I can't try something other than the Ditropan because my insurance won't pay for it. Now my doctor wants to try the interim therapy but I am not sure what to do. It sounds risky to me. I have 3 months before my next appointment to decide.

[mayray518]

I feel so bad for you. Elavil is the only thing that works for me. I started out on 50 mg and it took 3 months to work. I am now down to 10. Have you ever been on 50 mg? I have a few friends who have the interstim and have had luck with it. I think if all else failed I would have tried it. Hope you find something to help.

[kelly McC]

Hello and welcome,
Thanks for sharing your story. Your story sounds familiar hope someday patients can be treated and taken seriously early on. Heres a link to the handbook http://www.ic-network.com/handbook/ theres information you can read about interim therapy .
Kelly

[Laurleen94]

I am currently taking 50mg of Elavil. I take it at bedtime. About the interim therapy. I am scared to get it. I just have a bad feeling about it. I had a bad feeling about the hydrodistention but instead of listening to myself I listened to my doctor. It would be great if it worked but unfortunately I can't know that.

[Sarojini]

I would research Interstim very carefully before you have it done -- under no circumstances should you simply "let" a doctor do something to you simply because he is a supposed "authority figure." YOU have as much say in your healthcare as he does. Remember, it is YOUR body and only YOU can decide what happens to it.

That said, read everything you can about Interstim. You will find both good and bad stories about it; it seems to work wonderfully for some, and not work at all for others. Ultimately it is your decision, but you need to make sure it's an informed one :)