Hydro questions - Elmiron - relief? How long?

[kmaot]

Hello. Here I am posting again. I am starting to sound like a broken record.

I have been on Elmiron for about 3 weeks now but am desperate for relief. Hydroxyzine and Elavil are not having any noticeable effects. I am in a flare right now and can't seem to get out of the flare state for more than a couple hours. My anxiety is through the roof and I am tired of daily Ativans.

I have called my uro and may want a hydro done.

Question :
How many get relief from a hydro?
For how long?
How long can the post hydro flare last?
Does this affect the time it will take for Elmiron to work? (as it is disrupting the bladder layer)

Thanks so much.

[icjen]

The hydro didn't end up helping me with my symptoms so I can't be of too much help. Don't worry though. It has help many. I've heard the effects can last from about 6 months to 2 years. I was pretty miserable for the first couple days, and for about a week it was very noticable that I had a procedure done, but no more major pain or burning...just a small flare. As for the Elmiron, that's a great question. I don't think it does effect it, but I'm defiently not 100% on that. Hopefully someone else will know. Wishing you relief soon.
Jen

[allmart]

I had my hydro done on Friday morning and can still feel the effects pain wise, but not severe like it was the first day. I was in so much pain Friday night that I was in the fetal position, biting a pillow, squeezing the pillow so hard with my hand that my arm hurt-but that took my concentration off the pelvic pain. My uro did instill a DMSO cocktail immediately after the procedure and I think that may be why I had so much horrible burning the first 2 days. I found that using a spray bottle of water after urinating was extremely helpful in stopping the burning. I can honestly say I see a difference already in frequency. I thought the first couple of days it was just because I had so much pain when I urinated that I was holding it longer. Now that there really isn't pain with it, I have only used the bathroom 3 times in the last 6 1/2 hours instead of about 6 times I would usually. However, the uro did say he was able to distend my bladder up to 1000cc's, so I do have a larger capacity bladder. I am starting to notice some results from the amitryptiline as well-I think. It's hard to tell what's helping when you're using more than one treatment. I have also been on Elmiron for 6 weeks and following the diet. I completely understand about the anxiety! I have had to take xanax every once in a while to calm down and I hate taking it. I just don't like feeling like a numb zombie. I don't know if the elmiron has any interaction with the hydro, but my uro didn't say anything about me taking it at the same time. I would try the hydro-any chance of some relief is worth it to me. I also think it's good to see what your bladder looks like with the cystoscopy with the hydro just so you know what you may or may not be dealing with. Hang in there!!!

[kmaot]

Thanks for the stories. Does anyone else have info to pass along?

[ICNDonna]

A hydrodistentions gives me relief for on the average about a year. I'll be seeing my uro on Friday and will probably schedule another. I think this will be about #40 in my 31 years with IC.

I have read that about 50% of IC patients experience relief from hydrodistention. As long as it keeps giving me relief, I'll continue to have them.

The worst part of a hydro is the first few times I urinate is very painful. After that, it isn't too bad.

Donna

[Sarojini]

I have had one hydro so far, and it didn't give me long lasting relief, but the procedure wasn't too bad. I had quite a bit of bloody urine and pain the first 24-48 hours, and then it subsided -- after that, I just had body pains, which I suspect happened because the anesthesia used flared up my fibromyalgia and myofascial pain syndrome.

I also had DMSO instilled while I was still under, and I think that increases the pain during the first day or two. I would not allow this to be done in the future.

I may have another hydro this summer since I am with a new uro and he wants to see this bladder for himself, as well as to see if the IC has gotten worse or better, but I haven't made the decision to go for it yet.

[liznazz]

I only had my hydro/cysto when I was diagnosed. It was painful to urinate the first few days, but my problem was that I developed a UTI after the procedure. Once that was cleared up, ( a few weeks), I started feeling better, BUT the elmiron (which has been a lifesaver for me!) didn't kick in until about the 8 month mark. I know it seems like a long time from where you are now (3 weeks), but this too shall pass. I never used the hydro for relief of symptoms but rather diagnosis. After about 8 months on elmiron, atarax and celebrex, I really improved a LOT. Some people on the boards have had relief after their hydro/cysto. The one thing I do remember is that after the procedure, I was able to hold a lot more liquid in my bladder than before. Good luck to you. Keep us posted. liz

[sweetangel2080]

I got some relief from the hydro as I was able to hold more in my bladder due to the stretch. I still needed instills to help after that. Stopped those due to UTIs though and waiting to go onto Elmiron - 8 months sounds like so long right now!

[mary124]

I have had about 8 to 10 hydros. They help for about 6-8 months. I usually have some pain the first 24 hours, other than that -I'm ok. I schedule them on a Friday and go back to work on Monday.