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desperate for some help and pain relief!!

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  • desperate for some help and pain relief!!

    Im new to the icn but I have struggled with it for 8 years now. It took them two years to diagnose me and about 10 doctors who didnt believe me. I have tried everything possible except removing my bladder. I recently was turned down at the ER and not treated because he accused me of being a drug addict. So i need help has anyone gone to one of the top hospitals and been treated or an ic specialist that seriously helped?

  • #2
    You may need to talk with your doctor about a referral to a pain management specialist.

    I think it would be a good idea to do that soon.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

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    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

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

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    • #3
      Donna,
      I am already at a pain clinic. They have done 2 nerve blocks and i receive norco and flexiral every month and it still is not working. Any other ideas anyone??

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      • #4
        I am so sorry that you had to deal with so many Drs that didnt believe you. That is an outrage! I am glad you finally found a Dr. who believes you to treat your IC.

        I am just wondering if you have ever tried bladder instillations? If so, how long did you try them and what was the formula you tried and did they give you any relief of any of your symptoms or help with the pain?

        I definately think you should let your Pain Dr. know that the things he is doing isnt working and see what else he can try. If he wont switch your meds, I think you should get your IC Dr to refer you to a different Pain Mgmt Dr. I see one myself and am on 30mg morphine every 12 hours, and 10 mg OxyContin 4 x a day. I am also on 20mg Baclofen (a much stronger muscle relaxor than Flexoral), as well as Zofran for nausea, and 60 mg Cymbalta, and 200 mg Lyrica. He also gives me 3 Lidocaine 5% patches a day, and 200 mg Seroquel (used as a sleeping pill.) Lastly, they give me 30 B and O vaginal suppositories per month for when I am flaring really bad and need a little extra help. So there ARE pain Drs out there who will help IC pain and if your pain Dr doesnt work out, then I think you should have your IC Dr refer you to a different one and hopefully the next one will work out.

        Best of luck to you! I hope you get help soon and finally find an end to your suffering.

        Hugs,
        Amaranthe
        Last edited by amaranthe; 08-26-2011, 07:19 AM.
        I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

        D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

        Meds: Estrogel (due to total Hyster)
        The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


        (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


        John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

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        • #5
          It means alot to here from someone out there who is actually treated for there pain. I am going to pain clinic this week and will def. bring up getting stronger pain meds, im always afraid to ask because I have been accused of being a drug addict so many times Also I have tried bladder installations not sure on which ones but they only helped for a quick fix the help only lasted how long I held the meds in my bladder so it wasnt worth the money and pain of being cathed for only 30 mins of relief. Thanks for giving a little more hope i need all i can get right now.
          Hugs and Prayers,
          Trisha Kay

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