A question for those who have improved after . . .

[Janie Miranda]

For those who have improved after cysto/hydrodistention . . .
Were your symptoms mostly frequency/urgency or pain?
I'm just wondering if the procedure helps mostly because it stretches the bladder so it helps with the frequency/urgency or if it does something different to help pain.

The reason I'm wondering is that I've gotten my frequency/urgency under control with the diet and I have a pretty normal bladder capacity. My main problem is just a feeling of bladder burning.

Has anyone been in a similar situation and had an improvement after the procedure?

Jane

[ICNDonna]

Before I have a hydrodistention, I have severe pain to go with the frequency. The hydro helps both.

Donna

[Janie Miranda]

Thank you for the reply donna!

[hisjenn]

i had cysto & hydro a couple weeks ago for diagnosis purposes, and it has not made any of my symptoms better... they were worse for the first 3 days, but now they are the same as before the procedure... but, in defense of the ol' IC... i did have a week of "before" and then a week of "during" mensus... so that's really unfair to say.

but what you said makes alot of sense. *nods lots*

[Debgail]

Hi there :) I was hopeful that the hydro would help BOTH frequency and pain. I had my first hydro 2 weeks ago and have found that I went from having such a tiny hardend bladder ...peeing ~30 times a day to now every hour and a half!!! Big difference!!!!! I NOW have HALF the normal size of the average persons bladder.....for how long ...who knows but in the future another hydro would be worth it for that alone. I however have NOT found that it has helped my burning bladder pain,its still there.....but I am sure peeing more often makes it worse.. so I have had a bit of a reprieve :wooho

I also stand all day doing hair sooooo my pain is probably more intense because of that as well.I will def. do another hydro when necessary even tho the first 3 days are brutal
Take care all! Debbie

[Babs RN]

I get relief from the pain and frequency for about 6 months after each hydro--minus the first two or three days right after which just plain hurt.

Hugs,
Barb

[~*~Christine~*~]

For me it helps with both. My bladder tends to shrink so the hydro helps with the uregency/frequency and since I'm one of the few who get multiple Hunner's Ulcers it helps with the pain since they are removed during the procedure. The bad part is that my second hydro only was good for about a month or so than my bladder started to re-shrink and the Hunner's came back :/

[Janie Miranda]

Thank you everyone! I really appreciate the input! Keep it coming!
Jane

[Barbie]

Hi,
I just had my first cystocopy last week. I didn't notice a difference in frequency afterward, but I pretty much had the frequency under control before. I stay on the diet almost all the time!I did notice more burning feelings after the cysto and figured it was from the procedure. I've been using pain meds and pyridium and feel mostly o.k.. My doc says that I should stay on Elavil as needed, and to try to see what happens without it. So far, I've tried one time to not take it and by the 2nd day I'm in pain again. So, for now I use Elavil, and Pyridium as needed, and sometimes a pain (anti-inflamatory) med. After a year of this I'm just starting to learn how to live with it. I'm drinking a Starbucks right now, and will probably be crying tonight, but I just have to have some "happy food". I feel so denied all the time. If I eat one more bite of plain chicken or plain pasta I'll go crazy! :bonk:
Barbie

[Janisu7]

Oh boy, would I ever love a coffee right now, I just finished posting that I was still sleepy and thought it might be the Elavil that I took for the first time last night, but I bet it is because I have not had a coffee in over a week !

But I too am curious about cysto/hydrodistention (is it the same thing as DSMO?), I will be seeing a uroligist for the first time soon and it might be what he suggests. I've not read enough to convince me to try it. I too manage my bad days with diet and Loratadine (since taking daily I have not had a bad flare, however have not taken for too long to know for sure) and I just took AMITRIOTYLINE (Elavil) for the first time last night. I am definately NOT in remission, but I'm managing. When I'm not in a flare my bladder capacity is normal. Diet plays a big role in my flares and overextending myself and or a combination of both.

[saptree]

I had my second cysto/hydro 3 weeks ago. Saw the doc today and he insists on 6 weeks of DMSO even though I'm feeling better than ever. I insisted that I was much improved after my first one three yrs ago. But he said I'm just experiencing a 2 to 3 week rebound where the pain goes away, then I'll be back to bad flares. So I lost the arguement and now stink like garlic. For me, I think the hydro/cysto does a ton of good with frequency and pain.

[Barbie]

Just thought I'd share my most recent experience. I had a cysto (no hydro)on Friday April 1st (yes, April fools day! That's appropriate). The first week after it I had burning and some pain and figured it was from the procedure. I just stayed on my meds. Then Sunday the 10th I stopped meds and went cold turkey to see what would happen. I've been fine, no pain or anything since Sunday. That's a record for me! No symptoms and no meds. I don't know if it had anything to do with the cysto, but I'm happy. Maybe the procedure itself helps in some way?Probably temporary, I don't know, but it's amazing that right now I seem to be fine. I'm just enjoying the feeling!Has anyone else experienced this after a cysto? :hmm:
Barbie