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16 year old with IC, desperately need some advice!

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  • Claire_A
    replied
    Originally posted by Jen.75 View Post
    I am 16 years old and I live in Australia. I recently had a cystoscopy with hydrodilation which confirmed what my urologist suspected - that I have IC. I have extremely severe pain, however no urinary urgency or frequency, which she admitted was a strange presentation of it. She wants to start me on Amitriptyline (which i can't have due to conflicting medications) and DMSO instillations. I am terrified of this! I already have too much pain to handle. I won't be able to stand anything else. I am also supposed to see a pain specialist in December.



    Currently on -
    Fluoxetine, Oxycodone, Panadeine Forte, Tramadol, Nurofen Plus, Doxylamine and Maxolon.
    Hi There Jen, where abouts in Australia are you?
    I am sorry to hear you are in such pain. Pain is my main issue as well. I refused a Hydrodistention though, for fear of making it worse (my urethra is super sensitive). I don't understand why, here in Australia they feel the need to do it as part of a diagnosis, it is cruel and causes more pain than it is worth. I would advise against DMSO and ask if you can do any of the "rescue instills" listed on here, I am not sure if many uro's are doing them here yet but I am sure if yours is an understanding one and you take the research in they would be willing to look it over. A lot people on here have found DMSO has made them worse, it is being phased out in the US I think? The Amitriptyline has helped me with pain in the past. As has Acupuncture, yoga/relaxation/meditation.

    Are you on the IC diet? Follow it to the T and it should help reduce your pain. This has helped me the most out of everything. Don't worry, you may be able to add things back in once you start feeling better but stick to it for a good few months.

    If you are interested in reducing inflammation naturally try MSM/Glucosamine supplements.
    Warm baths also help my pain a lot.

    Anything else, give me a shout!

    Leave a comment:


  • Jen.75
    started a topic 16 year old with IC, desperately need some advice!

    16 year old with IC, desperately need some advice!

    I am 16 years old and I live in Australia. I recently had a cystoscopy with hydrodilation which confirmed what my urologist suspected - that I have IC. I have extremely severe pain, however no urinary urgency or frequency, which she admitted was a strange presentation of it. She wants to start me on Amitriptyline (which i can't have due to conflicting medications) and DMSO instillations. I am terrified of this! I already have too much pain to handle. I won't be able to stand anything else. I am also supposed to see a pain specialist in December.



    Currently on -
    Fluoxetine, Oxycodone, Panadeine Forte, Tramadol, Nurofen Plus, Doxylamine and Maxolon.
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