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Doctor told me....

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  • Doctor told me....

    I went and saw my IC doctor and he informed me that there really isn't anything he can do to help me now. We have exhausted all our options, and now we are left with just prescribing narcotics. I have done all the things that are available except the DSMO treatments. Interstim, hydrodistentions that have helped twice but not the thrid time, self-cathing, rescue instillations, and all I am taking vicoden, percocet, duralgesic patches(Fentynal).
    I am still in pain and still unable to work, I am just nottoo sure what to do now, I guess that there really isn't anything I can do.....
    Thank you for all the information and input you have all given me.
    Started Vaginal Valium Suppositories April 2014
    Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
    Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
    Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
    Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
    Interstim repair December 2008,Removal of the Interstim August 2011,
    6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
    Diagnosed with Raynaud's Syndrome November 2013
    Ambien 5mg for sleep.
    Elivil 50 mg at bed
    Lisinopril 20mg in AM
    Effexor 225 mg
    Oxycodone 10 mgs 2 x a day for pain
    Baclofen 20mg 3x a day
    Phenazopyridine 200 mg as needed
    Omeprazole 20 mg at night
    Lyrica 450 mg daily
    Requip .50 mg at night
    Ketorolac 10 mg as needed for migraines

  • #2
    Kirsten, please hang in there. I know how awful it feels to think there is no hope.

    You know what, though? There are still other drugs to try - some people have gotten better on Cytotec, some people get better on Cyclosporine-A (that's a risky drug, though, of course), some people opt to have their bladders removed and they have a wonderful life then if the pain goes away (doesn't always work to relieve the pain, unfortunately.)

    And the most exciting thing is, there is TONS of research going on right now. I truly believe with all my heart we will either see an existing drug that is found to work for IC, or a new drug that will be rushed into trials and into the public's hands. Over 100 million dollars has been spent on research for IC now, and I really can't even keep up with all the new articles and the new medicines being tried now for IC!

    So, you are at a frustrating point right now, true enough, but I think there is a lot of hope for the future, and for the fairly near future, too! So please hang in there.



    • #3
      Lori is right, don't give up. Keep coming to the site, if just for the comfort of knowing there are others like you. Hopefully something in the near future will be of help to you. Hang in there. Hugs, Kathi
      One Day At A Time