progression?

[enk11]

Hello everyone

I have had symptoms for about 3 years but just got the official diagnosis a few weeks ago. Im handling it ok since I was pretty sure i had it anyway.

well, my main question is, does IC progress and get worse, or does it stay the same? I heard its not progressive but I feel like Ive gotten worse since the onset of symptoms. any feedback is highly appreciated.

thanks
Enk

[patricia1]

Hi Enke usually IC does not tend to get worse. But there are some that do get worse and actually believe this is because it has taken so long to get a diagnose and get treatments so it will get worse. Usually by the time you are diagnose this should pretty much be as bad as your IC will be. For me I went 5 yrs without a diagnose and was told by my uro had treatments started sooner, I would have done better. Most meds dont work for me.

Hopefully with your treatment plan and meds and with the help of the IC diet, you will start to feel better. One warning it can take several tries to figure out what treatments and or meds will work best for you.

[armslee]

I just had this discussion with my doctor last week. He thinks it can be a progressive disease. For me it has been as we both believe I was either born with IC or developed it around age 2. There have been periods throughout my life where the IC would cycle and get really bad, but not bad enough for a diagnosis.

Now I am at my worst and finally was able to be diagnosed. My doc said that it will either get worse, improve slightly or just plateau.

Guess it is different for everyone.

But I agree with what Patricia said about early treatment. Wished I had had that.

[enk11]

thanks guys for your responses.
I think it makes sense too, that the longer you wait to change diet, get on meds, etc, the worse it will get. unfortunatly, it seems like docotrs do not want to make the IC diagnosis unless the symptoms are already at thier worst. that happened to me also.

[armslee]

Enk11, you are right.

While being worked up for IC, I was also being worked up for MS, Lupus and Rhuematoid Arthritis. MS and Lupus are also hard to diagnose and some people wait years and years in agony too.
I am so thankful to God that he allowed my IC symptoms to show through. While I am in terrible pain, at least I am on meds now and a plan of action .....now just waiting for them to work

[Imustpee]

Mine got worse over the years..during my school years ( 1966 - 1978) it stayed about the same...I peed between every class and P.E. was the worst since we were usally outside for the whole class....riding the bus home was also a nightmare.. I did have a DMSO treatment in 1976, which the dr didn't even get it in my bladder...it ran down my leg when I stood up and I reeked all the way home...my parents never took me back to that uro..I don't remember anything changing much when I was pregnant with my son...I kept a port-o-potty by the bed since the bathroom was downstairs......then when I was in my early to mid 30's ( 1990 - 1994) it started getting worse, so I saw a uro that gave me a few DMSO treatments that did absolutetly nothing...so I quit going....then in 2004 when I was 44 it got really bad.. I saw the uro I see now...we treated the IC very aggressively with drugs and instills for 18 months but it just got worse and worse until I had my bladder removed 3 1/2 months ago..

[ICNDonna]

My IC was diagnosed in 1975 and is about the same now as at diagnosis. Actually, if anything, I do better than I did then because I know my diet triggers and have found treatments that are effective for me.

Only a very tiny percentage of IC patients progress after the initial few years.

Donna