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have EC and am so frustrated

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  • have EC and am so frustrated

    Hello to everyone,
    I just got off the phone with Jill who helpd me out alot.
    In Mar. I had a hysterectomy and shortly after that hadpain and discomfort in the bladded area. Pain would occure when mybladder was full, and then just as I was almost emptied. I could also have the pain all the time. I has a cysto told I had IC, received one
    instillation of DMSO had an allergic reaction to it landing me up in the hospital for 2 weeks. Had a repeat cysto with biopsy and was told I have EC. I have utilized the ICN alot, but am very frustrated that I am not getting an better. I have had 4 instillations of marcaine,elmiron. kenalog. and bicarb. I actually think I am worse as I amd on a Fentanyl patch and take dilaudid
    for the pain. I am on steroids, elmiron, neurontin, pyridium, nitropan, atarax.

    I am or use to be a very active person and have found that it is difficult to do plain old activities of daily living as I am so uncomfortable. Tomarrow I am meeting with doctors to discuss where we go from here. They have mentioned Interstim, continuing with instillations, and seeig the pain treatment doctor again.

    Does this get better????? I just want my life back. would appreciate hearing from anyone anything that can help

  • #2
    How long have you been on Elmiron? Once that was added to my other meds I began to slowly feel better after a few months. It usually takes 6 - 12 to notice real improvement, though. Hang in there - many of us do find relief! [img]smile.gif[/img]

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


    • #3
      It may be that some of the medications will help over time, but in the meantime, I suggest you consider seeing the pain specialist for help.

      Sending healing thoughts,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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:


      Diet list:

      AUA Guidelines:

      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


      • #4

        You are not alone! Please come back every so often and check in with us. Donna's right sometimes meds just take time. But when you're in pain, it's like we don't want time wasted.

        Thinking of you and hope your next appt you come back with some relief!

        <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> Jaime <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />
        Tons of support,

        IC angel helping families in need for the holidays. [email protected]


        • #5
          Thanks for e-mailing me back.
          Kim - I've only been on the Elmiron since 8/23. I know it takes time, but when you have so much pain day in and day outit just wears you down.

          Donna - Ihave seen the pain doctor when I was in the hospital, and I just saw my doctor today and we call the pain clinic and I have an appt. to see hime next Thurs. Wish it could be sooner.

          Last weekend I had a bad flare in which I had to go back on the fentanyl patch as well as taking the dilaudid. Prior to my instillation, a urine culture was taken. (I'm on predisone) I have a yeast infection in my bladder. It isn't good to have this, but I was glad to hear that I had it because it then explained the increase in pain etc.

          By the way, I am new at using the internet and writing e-mails etc, so if I make any mistakes take them in stride, and of course let me know what I did and how to fix it.