My Urologist put me on Elmiron two months ago and has not helped at all. I had explained to my doctor that it has not helped me and losing a lot of hair. He told me to keep taking it for six months, however I really dont like it and besides it's so expensive.
The only thing that is helping is the amatryptaline at night, bladder treatments, and pain meds. I am so sorry you were given this diagnosis, it really is painful and it sucks! This disease has really changed my life, but I do feel comfort from the people on this site.
Please let me know if you need anything or any questions answered!
Big hugs
Dee

First off, I am so sorry you got this diagnosis. IC is a horrific nightmare. There is no cure, only treatment options. Everyone is different so basically it's trial and error as far as treatments go. If Elmiron helps you, then wonderful, but I've heard from many people that it really doesn't help and the loss of hair is devastating. That only adds to the anxiety that we already have. I've opted for installation treatments. After two years I can say, Yes, they have helped me, but not 100%. All it takes is a UTI or some other trigger and I'm back to square one. The only difference is that I know how to handle the pain a little better. Not much, just a little. I sincerely hope that you find some treatment that helps you. Diet is very important. It's a difficult diet to live with, but for me, that's a small price to pay. I just wish to God the researchers would find a real cure for us. In the meantime, try to stay positive and do whatever it takes to keep the pain and frustration at a minimum. We are all here for you, so please feel free to vent to us whenever you need to.
Hugs,
Simone

Hi Angel255-

Yeah this disease sucks. I also have both endometriosis and IC. I drive with my job and I've had times where I couldn't get off the interstate and to a bathroom on time, and the pain was so horrible I couldn't hold it and ended up wetting all over myself....and in meetings where people had no empathy for the fact that I got up to pee 4 times in an hour because I was HURTING, not because I was being a baby who can't learn to hold it....they have NO IDEA how painful this disease is...it's isolating....

But what has been the most horrible thing for me about this disease is how it disrupts my sleep, and I am dysfunctional during the day because I was up peeing every 5 to 10 ten minutes all night long...

Well, my miracle drug has been Trazadone. I still have symptoms during the day, but the Trazadone has made it to where I can get some peaceful sleep at night without hurting. I take it in combination with Pyridium every night, and thank God, I can sleep again....

Elavil helped for a while, but I stopped it due to side effects, and I've been able to take the Trazadone with no side affects at all. I take 50 mg.

Elmiron did not help me and made my hair fall out like crazy. My hair is just now growing back after having been off of the Elmiron for several months.

Bladder instillations made my baldder feel SO CALM AND PEACEFUL, but only for the time that the medicine was IN my bladder and for a couple hours afterwards; then I was having problems again...not worth the time or expense.

The IC diet has been extremely important for me. It's been hard because I'm a strict vegetarian and having to combine the two diets. But, my bladder cannot tolerate anything to drink other than water; no high fructose corn syrup or artifical colors, flavors, or caffiene; NO fruits or tomatoes or anything with fruit juice or tomato juice in it; NO salad dressing, ketchup, mustard, barbeque sauce, vinegar, wine......Basically right now I am living on a diet of tons of fresh vegetables, rice, beans, lentils, pasta, bread, potatoes, oatmeal, cereal...and my bladder does better....and I will add other things back one at a time to narrow down what really hurts my bladder and what doesn't....

This disease is so frustrating and so isolating because so very few people understand it....I get so tired of hearing, "grow up and learn to hold it...."

I'm so sorry you have this diagnosis. Know that there are those of us here who do understand and what to support you.

Hugs.

Thank you all for the encouraging words everyone.it's nice to know someone understands what iam going through.....I don't feel so alone. This is really a horrible thing for anyone to go through....Thanks for the support. hugs

No no on Elmiron , there is law suits out , please try desert harvest , Aloe and marshmallow root