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In tears. I'm BURNING. Advice needed!!!!!

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  • In tears. I'm BURNING. Advice needed!!!!!

    The past few days have been horid!!!! I could not even make it through church and I am burning right now as I type!!

    I am on 200 mg Prydium
    Sanctura
    Flomax

    My Uro is telling me that there is nothing else that can be done for the burning. I asked her about installations and she tells me that with IC all those injections can just aggrivate and make it worse. SHe also tells me that physical therapy will solve my burning issue. I'm going out of my mind. If I didn't have kids I would have already committed suicide. I hate this disease. I HATE living this. This has ruined my whole life and my plans for the future. No body understands except this board. I'm tired of others telling me "do this or don't do that" when they have no darn clue as to what I'm dealing with. Somebody tell me... is there anything else I can do? What is this about baking soda I'm reading? I'm willing to stick a bomb down my throat at this point I'm just desperate for help.

    Thanks!
    Susan

  • #2
    try taking a warm bath.....it should give you some relief while you are in the bathtub!

    im having the same buring pain right now so i know how you feel!
    Erika
    wife to Jeremy
    mom to Emma (3-8-05)
    and Natalie (7-23-07)


    Meds i'm currently taking:
    Lortab as needed for pain


    Meds that did not help:
    Detrol LA
    Lexapro (caused urgency)
    Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)



    Comment


    • #3
      I'm so sorry this is happening to you! Burning is the one IC symptom that I'm least able to tolerate, -just horrid!

      I do use baking soda to ease the burn, 1/2 teaspoon to a glass of water. Some use a full teaspoon, but I've found that amount makes me gag! If your diet is sodium restricted this might not be a good fix for you though.

      Prydium usually helps me as well, but I see you're already doing that. Another trick I picked up here at ICN is to keep a squirt bottle of cool water in the bathroom to rinse with after urinating. And for me, diet is crucial to avoid the burns!

      Is this the only doctor you've seen for IC? Have you tried any other treatments so far? I'm kind of wondering about the comments she made to you about instillations, that nothing else can be done, and so on. Seems awful willing to give up on you! If that's true, it may be time to shop for a new doctor. There are quite a few treatment options to try, though what works for one person doesn't neccessarily work for the next. But odds are one of them will work for you!

      Hang in there!
      Vicki
      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

      Comment


      • #4
        HI! I can totally relate to the burning issue. I've had IC for almost 30 yrs and been thru it all. Have you tried Freeze dried Aloe Vera? You can read about it online. It had the same molicular chain reaction in the bladder as Elmiron had. I've used it for 4 yrs now and it really helps with the burning issue.
        Also I've started using MSM Gel 10 days ago and no longer have urethral pain (which was a major pain for me for the past 2 yrs!) It's an anti inflammatory that heals. Also I haven't had a flare since I started using it!! Amazing!! It's great stuff!! Sounds like you need to go beyond things the dr. can prescribe. Good luck! 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 pain.....it's amazing stuff!!:woohoo:

        Comment


        • #5
          Baking soda is good -- you can drink it in a glass of water, and or sit in a bath or sitz bath with a baking soda solution. Ice between the legs also helps a lot of people.

          Hang in there! Your life is not over and you will feel better eventually. We are all here for you.
          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

          Comment


          • #6
            If you're on salt restrictions, you could try some Tums instead of the soda.

            Be sure to drink enough water --- that helps with burning.

            And if you're not comfortable with what your doctor is telling you, it may be time to see another doctor for a second opinion.

            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/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            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

            Comment


            • #7
              did the burning start after you took the pyridum? I took it once and I burned so bad. I was given the new pyrelle, and it sent me to er I had a very bad allergic reaction to it in my bladder. I take urised.
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                Susan,
                I am so sorry that you are so frustrated and in so much pain. It's certainly not fair at all! And while I understand your frustration, please don't think that you'd be better off if you weren't here anymore. I know we've all felt like that at times, but you have a family that loves you and needs you. This disease can cause not only physical pain but also emotional pain. Don't ever hesitate to seek out a counselor or therapist to talk to...there is nothing weak about seeking help when you need it, in fact, I think it shows someone's strength when they can admit they need help.

                As for relieving your physical pain, you've gotten some good advice from the others. Heat works for some, while ice sometimes works, especially for urethral pain. A tip my physical therapist gave me is to freeze water in a rubber glove (in the fingers) and then take a finger and put it into your vagina...that can sometimes ease the burning. And, I agree with your doc that instillations can cause your urethra to become irritated, but the benefits that you derive may outweigh the urethral irritation. Also, I know many people here use lidocaine gel prior to instills to help ease the urethral pain.

                I do hope that you can find some relief soon. It's no fun to wake up day after day in pain..but it's worth it to wake up!

                ~Claudia

                "A heart is not judged by how much you love; but by how much you are loved by others."
                ~ The Wizard of Oz

                "If I ever go looking for my heart's desire again, I won't look any further than my own
                back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                Comment


                • #9
                  I am sorry you are burning so bad. The ice works very well. Seek out another dr for 2nd,3rd or more opinions. It can sometimes take awhile to find the right dr.
                  I know what you mean by all the advice people try to give you or by telling you what you are doing wrong! Someone had the nerve to tell me that i felt this way because "I didn't have sex enough" !!!!!!!!
                  For me when I burn it just consumes me. Hang in there!
                  mom to 3 wonderful kids


                  IC symptoms 7/03,
                  hysterectomy 11/04,
                  prolapse cervix 7/07
                  diagnosed: IC 2007
                  IBS 2008

                  Comment


                  • #10
                    burning

                    Susan, I didn't see your post until this morning, I hope you are feeling better today. As for the urethral burning I know how you feel this is my main problem with my ic. When I read a post about ice I couldn't understand how that would help, but it helps me alot. I take those gel packs you get for your cooler fold in half and put in my husbands sock and freeze, it feel wondiful when you are burning. I take my sock and go to the couch to relax. Also I drink a lot of water when I'm burning. As the other have said maybe you should see another doctor who can help your needs.

                    Hang in there and keep us posted.

                    Marshmel

                    Comment


                    • #11
                      How are you doing today?? I too suffer from burning these days. The pyridum helps but I love the frozen glove idea. When I get anxious the burning gets worse. Find someone who you can talk to about this and ask them to help you get some pain relief. You will get through this.....

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