newbie with questions

[mrsrmont]

I have suffered for 8 yrs with excruciating bladder, low back, perineum, pelvic pain, went to many doctors that did not have a clue except for the times that I actually had UTI's, finally found Dr Evans thru this board and saw him for the first time Monday, after my examination he is 98% sure that I suffer from IC but he must do the proper test first, he gave me 2 options, the first was a test that requires anesthesia, outpt hospital, cyst of bladder and possible biopsy, he indicated that this test had a very uncomfortable after effect for 2 days that was worse than any of my IC attacks (which are horrible)! The other is an in office procedure injecting potassium in my bladder that is painful if you have IC. When I read the posts on the board and see where everyone is mentioning the cysto with hydro, are you talking about the 1st test I mentioned? The one you are put to sleep? If so, how was your after effects? My other concerns are, I am so ready for relief and pain medicine, but I am so scared of medicine and so sensitive to so many medications. For example lidocaine at the dentist makes my heart race and makes me dizzy, and as I understand thru paperwork given to me, some lidocaine thru instills can enter blood stream, I am very nervous about Elmiron, and he mentioned that, because of all the side effects the drug lists. What has everyones everyones experience been, I am just so scared! :help:
Thank you
Kathy

[dancemomof2]

:welcome: The Elmiron worked great with me the first time i took it for about 6 months, the only side effect was tummy trouble for a couple weeks but it subsided. I started it again after tyhe birth of my baby 21 months ago and have had no luck at all with it this time.

[Dixiefireball]

yes the test in the O.R. is the sure fire way of telling a 100% if you do have IC the other test.....well to be honest some normal bladders has reacted to it. I would rather do the one in the O.R. some people even go threw a peroid of remission after the test is done. depending on the person some are in pain anywhere from one to several weeks after. just really depends on the person.

yes there can be some ugly side effects to elimron (you can have it by mouth or by a pill taken three and something four times a day depending on your uro's orders. it does take six mths to a year to see or feel any impovement for what i understand. I was one that couldn't handle the elimron so i do the heparin installment at home with marcaine. I heard that Dr. Evans is really a Great uro. Even my uro speaks well of him.
i do believe he will work with you until he can help you find some relief. he may even be able to change the installments meds around for you to help you.
I have always been told that the installments does not enter our blood stream because it was going straight into the bladder.
i do know as much heparin as i take if it did enter my blood stream then my blood should be very thin, but it isn't.
what ever you decide to do i'm sure your in good hands. Just remember the IC diet will help you a lot, there are no quick fixs to IC and each treatment will take time to see if they work don't give up if you don't see an improvement right away. give it time.
please if you haven't already check out the patient hand book at www.ic-network.com/handbook this has some wonderful information that will be very helpful to you alone the way to finding remission.
please keep us updated on how you are. We are here for you and most importantly we care and understand.
sending you hugs and prayers
Rhonda

[ICNDonna]

There are advantages and disadvantages to both manners of testing. The test that is done in a hospital is the cystoscopy with hydrodistention. It usually will diagnose IC. The advantage to this can be a remission after the first discomfort is gone. Hydrodistention has been a major treatment for me for all of my 31 years with IC.

The potassium sensitivity test is done in the doctor's office. If the potassium solution causes pain, it's considered to mean an IC diagnosis. The good thing about this test is that it's over quickly --- and if you do have pain, they normally will instill a deadening substance immediately so the pain will go away. You'll want to be certain you advise the doctor of how you react to lidocaine.

Warm hugs,
Donna