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I was just diagnosed last week

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  • I was just diagnosed last week

    I was having alot of pain, thought it was a UTI and was prescribed bot Cipro and Bactrum, but nothing worked. They then told me I needed surgery to have a cytoscopy, but most likely I would not have IC. Well, they found out I do have IC. I am an art teacher and have been off work for the past two weeks recouperating and trying to handle everything. I have not had much pain after the surgery and the enlargement of my urethra, until yesterday. I do not know what triggered the pain again, but I was pretty miserable yesterday and today. I have been trying to follow the diet on this site. I really do not know what to do from here, and I am seriously worried my whole life will change now. I was pescribed Elmiron, Levsin, Vicodin, and an ati-depressent. I have decided at this point I do not want to take Elmiron and the anti-depressent, for fear of side effects and the fact that nothing can be cured by these medicines, only treated until I stop medications down the line. I look forward to meeting everyone :0


  • #2
    Sorry you have gotten this diagnosis, but at least you know what you have. I can't believe how long some went without answers. Once you know what you have, you can weigh treatment options.

    Well, you got loaded down with medication, didn't you? The Vicodin may help with your immediate pain, but I wouldn't blame you if you wanted to add the other medications one at a time so it would be clear which ones were really effective. And while they may have side effects, as with any course of treatment, you have to weigh the benefits with the bad.

    You may want to study the alternative treatments. Some have had success with aloe vera and others with cystoprotek. Both provide a coating for the bladder to diminish symptoms. None of these treatments cure this disease, I have yet to read of a cure. It appears that each patient must use trial and error to find the treatments best for them. Most medications and therapies appear to be only 20-50% effective, so everything doesn't work for everyone.

    You say you are not sure what to do next. As a teacher, you will appreciate that the best next step is education. Devour everything you can find out, the patient handbook linked at the top of this page is a good first step. You have been changed for life - but not as much as you think. For the vast majority, once you find the treatments that work for you, it is more like a life adjustment than a life change.

    Good luck, and glad you found this forum. It has helped me immensely.


    • #3
      you will find a weaalth of info on the icn.
      You are right IC is not curable by the meds, they were given to you in the event they may differently help you. Elmeron helps replace the gag layer around your bladder to maintain elasticity. It can take Elmiron up to 8 months to feel a difference. The anti-depressant and vicodine will help the pain.
      Did your doctor do urethra dilation? That is old school, and would diffentlay have a second opinion before you let him do that again..
      The surgery you had most likley was a procdure called a hydrodistention/cystocopy.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        urethra dilation

        <<Did your doctor do urethra dilation? That is old school, and would diffentlay have a second opinion before you let him do that again>>

        Tell me more about this. I have had dilation done every 6 months for 2 years. I dread having it done as it is painful, but I feel better afterwards.


        • #5
          If you have a very tiny urethra, dilation is appropriate. It worked for me. If it's just being done because in some cases it helps, that's not usually a good reason to have it done.

          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


          • #6
            more info

            I would also read the Ic survival guide which you can order online thru this site. It was most informative in many different areas, infact I had 2 copies and gave 1 to my Uro . his nurses loved it. I know you are probably feeling a little overwhelmed with all the doctor thru at you in tha way of the meds,one thing that helped me was to research them on the web. As you will find out what works for one person ,won't work for someone else.
            Blessings & Hugs,


            • #7

              It is true that IC is a lifelong disease that has no cure, but it can be managed. I am proof of that.

              You can expect support from the ICers here and lots of information.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation:

              Institute of Female Pelvic Medicine (J. Dell, My MD)
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas