need help with treatment options

[Gretchen1]

Hello everyone,
I have had IC for 10 years, diagnosed for 1 year. I have had a hysterectomy unneccesarily and have IBS ( bile induced diahrrea from gall bladde removal). I have many specialists now that I have procured but nothing seems to be working. Narcotics are unbearable with side effects and dont touch the pain, tried Elmiron, Amitryptiline, diazapam, histimine blockers, biofeedback, physical therapy pelvic floor, uroxotrol, sanctura and have been living the IC diet strictly for over a year. I want off of the narcotics as I know they are not good for my organs long term. My doctor is now recommending interstim. Does anyone have any experience with this option? I am desperate, so tired of living in pain every day. I am 37 and cant envision another 40 years of this.
Thanks
Gretchen

[SharonA]

Hello Gretchen and :welcome: to the ICN

There will be a lot of people here who will tell you the same thing I am about to tell you...Interstim is not for pain. It is for frequency/urgency. Please check out the posts that have been written about this issue from the people who have had this surgery. There is a whole section of the boards decicated to the Interstim. Take the time to do your research. Learn all you can about this.

:) :) :)

[Dixiefireball]

:hi: and :welcome: to the ICN boards there is many on here who have had the interstim some have good exp. with it others not so well :( however all i know about the interstim is it isn't for pain.
the ic diet may help you you can check that out if you haven't already at www.ic-network.com/handbook you can also read about other treatments there for i.c that may help.
know we are here for you and care.
sending you hugs and prayers
Rhonda

[melanie626]

HI-
Please read the posts under Interstim. I had the trial done and it did not work for me. If you want to chat about it, please email or PM me. (melanie626@yahoo.com)
Best of luck-
Melanie

[patricia1]

Hi I am sorry for your pain. I like you had a uneccesary hystrectomy, this was before my IC was diagnosed. I have had IC for 9yrs and was finally diagnosed in 2001. I have urgency freq and pain. I also have the interstim. I also can tell that the interstim is not done for pain relief. Some patients who have gotten the interstim have found some pain relief but this was a added bonus. The interstim is done for urgency and freqency, not for pain. Please make sure you do your research before agreeing to do this, espeically if you want it for your pain. There are pros and cons with this treatment and it is done as a last resort, when all other forms of treatment have failed. Please look at the treads for the interstim on this site. You will see my story along with others that have had postive things happen from the interstim. Best of luck to you.