can't seem to find relief anywhere!

[peachycajun]

Well, I had my cysto-hydro on Tuesday, June 15th, and seem to feel worse afterwards! They tested me for an UTI, but nothing showed up. The doctor who I am seeing said that I did have IC, but it didn't look that bad and I shouldn't have the amount of pain that I have:confused:

One question I have is "is the amount of pain in proportion to how bad the IC looks in the bladder?" I wish I didn't have this much pain. The dr tried to do bladder installations with elmrion using the theory of putting it straight into the bladder it would work faster, but everytime I had an installation, I had a MAJOR flare! Now he is talking about doing the same thing but with steroids. Has anyone ever heard of that and how did that turn out?

As alot of other people on this board have shared, I have missed sooooo much work due to this. :shake: The only thing that seems to help is to be somewhat sedated, but I can't live life that way. My doctor wont prescribe me anything and when he does, it always something like Tylenol 3 or ultracet....which don't even touch the pain.

I am engaged and the IC has really put a damper on that relationship. Don't get me wrong, my fiance' tries to be understanding, but he always tells me I need to get out and do something....I wish I could! I have gained around 25lbs since all this started last August and feel terrible about myself.

I just pray that someday, someday soon, I will find something that helps.

Thanks for listening and for any advice you could offer.

danielle:headbang:

[Sarojini]

I'm sorry you are still feeling so bad :(

As for whether pain is proportional to how the bladder looks, I don't know... my guess is it IS to some degree, but it also depends on other factors -- like how much nerve involvement there is, etc. I can imagine a situation where there aren't many glomerulations visible, but there is underlying nerve damage, and that would cause a lot of pain.

Regardless, I don't like uros who make broad statements like "You shouldn't be in this much pain." How do they know?????

I'm sorry you had to go thru this...

[Cali girl]

:kiss: :pray: :grouphug:

Cali
:dogrun:

[ICNDonna]

I have had steroid instillations and they were very soothing. When I have a hydrodistention, I have a continuous irrigation overnight with a steroid solution.

I hope you're feeling better soon.

Donna

[vm]

Some people who DO have IC have bladders that don't even look like they have IC when they get the cysto w/ hydro. So, it would seem that in some situations the bladder may not look as "bad" as the pain level the patient is experiencing. I hate that he said that to you ---- unless he is thinking there may be something else going on that he wants to diagnose.

Hang in there. I wonder if a different doc would treat your pain more adequately?

[peachycajun]

thanks to eveyone......

I do have another appointment with a different doctor on Thursday. I guess I'm kind of going for a second opinion. I'm not to sure how I feel about the dr I'm seeing now. Sometimes he seems very sympathetic and other times it is very aggravating. So I guess I will see how my appointment goes on Thursday with this other dr......and this dr is a woman. Not sure if that makes a difference or not, but maybe she will be alittle more sympathetic to my pain. Also....she specializes in IC, but then again so did this dr or so he said. I have Dr. Moldwin's book "Survival Guide for IC" and he hadn't heard of half the treatments in there.:hmm:

Thanks again and I will let yall know how Thursday goes.:pray:

danielle:)