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Interstitial Cystitis

Posted , 3 users are following.

jean68130
jean68130

After trying every pain killer imaginable (even morphine) for 5 years I went to see yet another Urologist who confirmed that previous bladder cancer treatment had left me with IC and said he could not give me any meds strong enough and I had to visit the Pain Clinic, Please can any one with IC and had good results with meds tell me what you are taking - I have been like this for 5 years and it is getting me down.

Thanks

JX

1 like, 3 replies

3 Replies

  • ruby1201
    ruby1201 jean68130

    Edited

    Hi Jean,

    I too have recently been diagnosed with IC after suffering for a long time with frequency, urgency and pain all without presence of bacteria causing a uti. 3 weeks ago my bladder went in to urinary retention and ive had to begin ISC (intermitent self catheterising) due to this. This is not a common symptom of IC, however i am a vulvodynia sufferer and consultants seem to think the retention is my bodies reaction to the pain of the IC. After spending 14 days in hospital in excrutiating pain, also like yourself using morphine and every other thing under the sun...im home and seeing slight improvments. I am taking a medication called Elmiron which mimics the same kind of mucosal structure of the bladder, essentially repairing it. i also take 10mg of amitryptiline at night and i also today started a course of bladder instillations, which are introduced directly into the bladder through the single use catheters that i have been using. it is too early to say if the instillations are working as they do say that it takes a few doses (1 a week for 6 weeks) before you feel the effects. however, i am seeing somewhat of an improvement all be it small, from the Elmiron and Amitryptiline. These also take some time to work, but it would be worth speaking to your doctor to see if this could be an option for you.

    I am still processing myself the horror of what this condition does to you mentally and physically, but even having these options to try has certainly lifted my spirits...and i hope this reply helps you believe there is things out there to help this and you are not alone in dealing with this.

    stay safe and i hope this helps even just a little xx

    • jean68130
      jean68130 ruby1201

      Posted

      Hi Ruby, thanks for replying. Gosh you sound as though you too have been through the mill with pain and trying different meds. I will definitely see my Urologist and ask about Elmiron and Amitryptiline - got to the stage when I will try anything to be pain free. Trying new meds takes time to see IF they work and like you they never do. Many thanks for the info I will be using it. Seasonal Greetings. JXXX

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