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  • painfull

    Just recently being diagnosed with IC and not really having anything to take away the pain, I wondered what other sufferers used. Regular over the counter pain meds just don't touch it, they gave me Elavil, but I find this is much more of a sleeping pill than a pain pill, sleeping is not a problem. I definitley have flairs of pain as I can go a couple days without any and then be in such severe pain I have avout 7 seconds inbetween severe pain surges. Wondered what other people were experiencing and if they had any suggestions for pain meds.

  • #2
    I would suggest you ask your doctor for a referral to a Pain Clinic. A lot of IC'ers need better pain control than we can get from the urologist. There are a lot of options for pain management; I'm sure if you read the threads that are already posted here, you'll get some ideas, but it's best to discuss all options with a doctor who knows this area well.
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

    On the Beach with IC


    • #3
      First of all to the IC network. Sorry that you have IC but you have found a great website. Alot of us here take Elavil. It's not really meant to be a sleeping aid though it does tend to help people with their frequent trips to the bathroom throughout the night.
      It took a couple of weeks of me taking it to see a difference but it is supposed to help w/ frequency and urgency and also with the nerve pain a lot of us experience. It has helped me with my nerve pain but I had to take it earlier in the evening, around 8pm so I"m not exhausted when I get up in the morning.
      Other things that I use would be a heating pad, it does really help. I actually have one that I keep just at work so I'm never w/o it if I'm hurting at work. I find that sometimes over the counter AZO or the generic brand that the pharmacy has can help. It makes you pee orange, it really helps with the burning that we sometimes get. I try to take tylenol or advil during the day but if I take advil I always take prelief with it or it can really make you burn and feel worse, some people can't handle it at all.
      For really bad pain my dr's usually give me at least a small rx for vicoden. I try to only use them when I'm having a lot of pain.
      I hope that some of these suggests help and I'm sure that some of the other gals will chime in.

      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus


      • #4
        Thank you, right now I am seeing only my gynecologist and thier only suggestion for my pain was to up the elavil and it just doesn't seem to be enough for the painfull flares, a pain clinic sounds like a good option to try, thank you!


        • #5
          I have ultram on hand for bad days. Two weeks ago my uro ordered some extended release ultram and they are great --- they last a full 24 hours.

          Stay safe

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          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Anyone who says something is foolproof hasn't met a determined fool


          • #6
            Pain clinics are great. My Rheumatologist is also a pain manager so he wears 2 hats.
            I use Lyrica for nerve pain.......tho it causes weight gain.......but it does help with the nerve pain! Elavil works great for me for frequency/urgency and pain. I hope you find someone to help you! Roxie

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo: