Does this get worse?

[CathyKi]

I am five months into this IC with diagnosis and I would like to know if it is going to continue to get worse, like it has been with more and more frequency. You can see the medications I am on and I have really stuck to the IC diet. And it continues to get worse.:toilet:

[Briza]

My symptoms started with a bang and went from bad to worse over a period of about a year and a half. This seems to happen with some IC patients, and then the symptoms kinda stabilize and become not so constant and more apt for you to feel a good response to your meds and treatments and diet. That's how it went for me, anyway Best wishes....I hope your treatment plan works for you; in the meantime, hang in there...most of us get to a point where things ARE manageable with time, treatment, diet. I wish the same for you :grouphug:

[kadi]

My doctor told me that IC does not usually progress after the initial 18 months or so, and that was the case for me. I have had much improvement with adding in the heparin/marcaine/sodium bicarbonate instillations & physical therapy.

I think Briza said it very well & I hope the same for you too,

[cindydi]

For me it did not progress. Once I found the right medication it got better for me.


Cindy
My doctor told me that IC does not usually progress after the initial 18 months or so, and that was the case for me. I have had much improvement with adding in the heparin/marcaine/sodium bicarbonate instillations & physical therapy.

I think Briza said it very well & I hope the same for you too,

[SharonA]

I have not progressed past the point I was in for several months after being diagnosed. In fact, I began to feel much better once I started watching what I eat and taking Elavil. I hope you find yourself turning the corner and heading back to being much better very soon.

[Claredale]

Mine was mild for the first few years, pretty much just freq/urg with some pain. I even went into remission for a couple of years. It came back with a vengence when I came out of remission. My doctor did another cysto and found that my bladder was a mess and said that I had progressed into the severe stage. I am not the norm from what I understand, but once I got to a great doctor that was very knowledgeable with IC, I was actually handling it better than I did a lot of the days when it was mild IC.

I am feeling much better after finding the right combo that works for me. I also had the interstim which I was fortunate to benefit from it.

[GriffsMommy]

I don't know if mine is progressing or not. Up until recently I felt horrible all the time but I think part of it was that my bladder and whole pelvis was such a mess it felt like I was getting worse because there was never a break. I have to agree with everyone it takes time to find the right combo of meds for you and it seems that everybodies is a little bit different. I am by no means in remission but I can imagine myself getting there. I hope you find the right combo for yourself soon. :grouphug:

[ABliske]

Kadi, thanks for posting that. I think that was true for me. I think by the time I got diagnosed it was at it's worst, but I'd already had it for 15 months. It might have gotten a little worse after that. I had 2 hydros (1 with capsacian). Right after my first, I could no longer go through the night without peeing and I think the second might have shrunk my bladder a little. My uro said my bladder was at 700 ml the first time and 600 the next.
I was so scared that it would continue to shrink and I'd have to get it out. I have been doing okay though. I have had it now for 3.5 years.
Sorry that for some of you it has become severe later on after diagnosis. That must be really frustrating. I am always frustrated by not knowing how I got it and how it got so bad. I really wonder though if treatment would have helped me earlier on. I am not sure anything has worker other than to mask the pain.

[Claredale]

I have no idea what caused mine to get worse. I know that since I have stopped all caths I have done much better. Everytime I had to be cathed whether from a procedure to just emptying my bladder, I would end up in a flare for several days to weeks. That is when I had more problems emptying my bladder and was strain so hard to get out a few drops, even though I knew it was horrible on me to strain, I was so deperate for relief.

[CathyKi]

I guess I am about ready for my first instill. My appointment with my Uro is this month so maybe he will suggest something. Does your bladder shrink with IC?

[mary124]

I know when I was first dx with IC back in 1992, I had a mild case; however it did progress to severe.( both my Uro and the Uro/Gyn said I had the worse case that they seen in a log time). But with medication and treatment I do alright.