Everything I have read on this site indicates their are different degrees of IC. I had a terrible relapse in April. I have been very strict on the diet. I find I am starting to get better. I am adding more foods that I could not eat before.

Have you seen the diet on the IC Network? It helped me tremendously. Sandy

There's definitely different degrees of IC. When I was 1st diagnosed it was the worst pain I'd ever experienced. Doctors didn't give pain meds for IC. I wanted to die it hurt so bad. It changed my life it was just the beginning of this long nightmare of living hell. One disease after another now all of them are hitting me hard at the same time. I'm miserable. I wouldn't wish this on my worst enemy.

Colostrum worked for IC better than anything else that was offered to me.

what is colostrum? we're always interested in success stories here

Mine treats me like an angel compared to most of what I've heard. The majority of my issues is just allot of discomfort. It's not often that I am in pain.

i haven't heard of colostrum. i am taking Elmiron but i really can't tell that it has helped this past year. i keep having flairups. last night i was so miserable i couldn't hardly walk! this doesn't happen every day but it happens ALOT usually about once a week or more. i have IBS and that makes it worse. i also have Addison's Disease and it all works against me. at least i know that there are degrees of IC and i am not CRAZY!! Thanks for all of your replys.
is colostrum a prescription drug?

I'm confused. Did someone imply that you were crazy?

NO...i'm sorry i didn't mean to confuse anybody. i am the one that sometimes feel like i'm crazy. i am more emotional and feed depressed more often because of the pain of the IC and the fatigue and sickness that follows it with the addison's disease that's what i meant by that.

Ahh

I wonder the same thing I don't know for sure and have not received a straight answer from my doctors. Between my past and current doctors and the ones I have consulted with (about 40 at this point) they have all said I have the worst case they have ever seen. I have had a hard time getting help (partially due to Tricare and the way the military system works) but a lot of it is the Elmiron didn't work I'm in constant pain and no one knows what else to do for me. I continue to get worse and basically live on our couch. It's not something I say much because I know it's difficult for everyone that has it and I don't want anyone to feel like I'm saying oh I have it worse (which I'm absolutely not!).

Anyways from what I was told IC is discovered by tiny cuts on the bladder, during my diagnostic cystoscopy which was when I was diagnosed the doctor said he lost count around 1000. I don't know if the number of cuts always correlates to how severely someone's symptoms are, but in my cause it does.

thanks so much for your reply.
i know just how you feel. i am so miserable so much of the time. i have stopped saying anything to my family or friends because i know they must be sick of hearing about it. i feel very defeated!!
i have not been able to tell any difference since taking the Elmiron and that was a year ago.
when i had my diagnostic cystoscope my doctor was shocked also....well now i understand completely how horrible a disease it is. my doctor said he had had 3 patients to commit suicide. he said that is what made him take the disease much more seriously and he does try.

Have any of you decided to try Gluten free? Some seem to think it is a major contributor. Sandy

Sheri, I'm not sure there are degrees of severity, such as how cancer is staged, but I certainly believe IC is progressive. It get's progressively worse as time goes by, especially if our treatment isn't adequate, and in many cases, that's our reality.

In my area, my urologists have found my IC to be exceptionally bad, among the worst of the cases they have seen. I had great success with Elmiron, but because of a conflicting liver disorder, I had to stop taking it. It was literally killing my liver. I had to resort to self catherizations every day, delivering the Elmiron directly into my bladder.I was fine with doing this. The only problem there was the reoccuring SEVERE kidney infections I kept getting because the insurance company wouldn't pay for a new syringe each time I had to cath my self. Even though I boiled it and cleaned it, it's hard to do a sterile procedure at home. I finally had to abandon the treatment because it became counter productive. Now my only course of treatment is occasional hydrodistentions, diet, and pain medication. There is no better for me.

so sorry whitsinn that you are having such trouble and pain with your IC. i know how awful it can be!!! i really haven't found that diet has helped me any.
i have really painful days that i treat with the orange pee pills(that's what i call them) and pain pills.....i HAVE to no other choice. then i have days where it's not so bad.
all in all IC is a monster!!!

I'm glad to read all this, not because I'm glad you're all in pain but because I'm not alone in this battle. I just moved away from all my family and friend this year and was diagnosed shortly after so it's been pretty lonely suffering in pain that no one seems to believe is there. I do at times also feel like I'm crazy due to the lack of compassion from other people with out this condition. All the "try this" or "you should be doing this" from people who have no clue what it feels like to be in this much pain and that no OTC pain medication will reduce the amount of pain involved. I wish the best for you all and hope all of you can find some degree of comfort.