I am newly diagnosed... been suffering for years

[Vesta19]

A couple of questions....

since we are not allowed to have caffine how do we stay awake?
why won't be doctor prescrible any pain medication?
will the elmiron instills work? and do we have to take elmiron forever?

has anyone used prelief? does it help?

i really don't know if i can deal with this, it's horrible.:help:

[leelee88]

A couple of questions....

since we are not allowed to have caffine how do we stay awake?
why won't be doctor prescrible any pain medication?
will the elmiron instills work? and do we have to take elmiron forever?

has anyone used prelief? does it help?

i really don't know if i can deal with this, it's horrible.:help:

You could try the low acid coffee from the ICN shop.. When I am craving coffee this is what I use.

Most Drs will not prescribe pain meds, they want to give other meds time to work first. There are MANY other meds that can help with pain control that are not pain medication (narcotics) But if you feel that, that is what you need then I would ask for a referral to a pain clinic.

Most people do have success with the Instills BUT they take time, also if you are taking Elmiron orally that also will take time, up to 6 months to a year!

I use Prelief And it does help me!! But you would have to just try it for yourself!

[Tuckersmom]

Elmiron is not a cure. If it helps you, you must continue to take it, or you'll go back to the symptoms you had with IC.

[targirl81]

Hi Vesta19: I suffered needlessly for years. I had the proper diagnosis but the wrong docs and the wrong treatment. I was diagnosed in 1998 and just kind of lived with it until a MAJOR flare in the summer of 2005. After many ER visits as well as consults with my local urologists I got no relief. And my docs were not keen on pain meds. I started doing internet research and found this marvelous message board. I got my urologist from someone on this message board. I also have Pelvic Floor Dysfunction (PFD). I am on a maintenance regimen of low dose valium and I also take hydroxizine. I have darvicette on hand for flares. I am in NC so try and get a referral closer to where you live. As far as the coffee goes, I can have a latte which has mostly milk and very little caffeine. I usually get a decaf but a regular one doesn't seem to bother me. Good luck and keep looking for a doc who really understands IC and isn't afraid to prescribe the meds that you need in order to have a life!