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  • I am going crazy

    I am in a flare. Have been over a month or maybe even longer. My doc. did a cysto. in the office and has a dilation planned. He sent a uA to the lab which he doesn't usually do and after almost two weeks I haven't heard a thing from him. He is senting me to PT for what I don't know. I am feeling awfull. All I can think is that something more than just IC IF thats not enough is going on. I think I think to much. As he gave the urine that he removed by cathetar to the nurse he used the words in situ. Well I studied that word and it refers to cancers. I which I know what is going on. I think that all this not knowing is making me feel worse. We went to Arizona last week-end to see sons family. I hurt the whole week-end. We had to stop every hour or so to go to the bathroom. I think my daughter in laws grandparents must I thought I was crazy. OK enough griping my life could be alot worse. Thanks for being there. Thats how I feel.
    Interstitial Cystitis Stomach problems
    diastolic dysfunction
    vascular insufficency of left leg
    pelvid floor disorder
    hypothroidisim
    asthma
    bread cancer - 5yrsl. remission
    swollowing difficulty
    fatigue
    lots of doctors
    lots of med.














    Keep your eyes on the Lord and he will direct your paths.

  • #2
    Hi, Big Red

    I know you must be at the end of the rope. I too, have been in an awful terrible flare for over a month. I just got back from my Uro and here we go, trying some extra meds, as well as new meds. I am trying now to decide; is it interstim or another Hydrodistention if things do not go well in a few weeks. How did the hydro go for you? Has it made things worse or a bit better? I am so sorry you are in such misery; all I can tell you is that I am in the middle of this mess myself , having been very fortunate to have a long ride with a great remission. Have you ever had a remission? I try and remember what it is like not to feel my bladder all the time! Those were glory days compared to now.
    I am thinking of you and realize what this awful, crappy disease does to us.
    Please take care of yourself. I hope you have someone to lean on. At this point, I need this group badly.
    I will be thinking of you and hoping we both can beat this monster back!

    Love,
    Katheryn

    Comment


    • #3
      ((((((((((((hugs))))))))))))) I am so sorry you are feeling so bad..I hope your results come back ok...I will be praying for you
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        I haven't had the hydro yet. I have had some in the past. It seems to work for a period and tehn I shrink back up. I am anxious to try it againl. I have an inter-stim sometimes I think it works and sometimes I don't. I have had some good periods but it seems like not to many. This last visit my doc but me on whats called an Oxydel patch. I don't see were it is doing anything. I got my Physical Therapy appt. for the 6th of March. Hopefully this will help with the pain from the urethra to the vagina. Dont really know what to expect there. I have a great husband who really cares even though he has his own physical problem that he is focused on at this time. I hope you get feeling better soon. Sending you a big hug. Thank-you for the nice messages of concern to both of you. Have a great day.

        Thank-you for your prayers. I know that all of this is in God's hands and I will get the news when I can handle it.
        Interstitial Cystitis Stomach problems
        diastolic dysfunction
        vascular insufficency of left leg
        pelvid floor disorder
        hypothroidisim
        asthma
        bread cancer - 5yrsl. remission
        swollowing difficulty
        fatigue
        lots of doctors
        lots of med.














        Keep your eyes on the Lord and he will direct your paths.

        Comment


        • #5
          I feel for you, I too have been in a pretty nasty flare for almost 2 months. It sucks BIG time. I understand wanting to try anything to feel better again. I hope someting helps you soon, big hugs to you.
          Mom to:
          Ella~born 10/14/03
          Travis~born 5/8/06

          Meds:
          Elmiron~2pills 2X a day
          Elavil~50mg at bedtime
          Had great results with this for almost 2 years. Currently in a flare since 1/9/07 Trying Urised, lidocane cream, Cystoproteck and now Benadryl at night to try and stop it.

          Comment


          • #6
            Hi

            I am so sorry to hear, you too, are in a nasty flare! This is torture, but I am telling myself today, that these things can go just as fast as they hit us. I hope you feel better soon, and if you find anything that helps turn you around, let me know. I will think of you. take care,
            Katheryn

            Comment


            • #7
              in situ means "in the original position" so it may not be related to cancer at all in your case.

              Will be praying for you...
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #8
                I got the URine results and all the cells are neg. Now if we can just do the Hydro. maybe things will be better.
                Interstitial Cystitis Stomach problems
                diastolic dysfunction
                vascular insufficency of left leg
                pelvid floor disorder
                hypothroidisim
                asthma
                bread cancer - 5yrsl. remission
                swollowing difficulty
                fatigue
                lots of doctors
                lots of med.














                Keep your eyes on the Lord and he will direct your paths.

                Comment


                • #9
                  Hey Big Red

                  Negative!!! great news for you in many ways.
                  I hope you get the Hydro scheduled soon and began to heal.
                  Best,
                  Katheryn

                  Comment


                  • #10
                    That is great news about your test results. I hope you get the other one scheduled soon.
                    Miss Bessie

                    Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                    Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                    Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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