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  • New person and new problem

    I was diagnosed with IC about a year ago or maybe a little longer. This doctor did a potassium test and even the water hurt.
    This same doctor gave me 2 DMSO installations two weeks apart. I threw up at least twice a day every day. The nurse said that he had said that we would try it one more time to "make sure that's what is doing it"
    I said no thanks and did not return to that doctor.
    My primary care doctor is very good but would much rather have those symptoms dealt with by an urologist since they are supposedly trained to do that. One time that I went to the emergency room; there was this great doctor there who had a wife with fibromyalgia so he really seemed to understand.
    He gave me the name of a doctor that I went to see that same day. He was a great doctor and very young but the graduate student health insurance I had at the time was awful. They would not pay because it was not coded correctly. They said they would not pay if a procedure was done at the same time as the doctor’s visit, even just a urinalysis.
    Since I now owe him $500 he will not see me anymore.
    I went to a new urologist who had me do a urinalysis and left me waiting about 2 hours or more. The nurse came in and said, “Do you feel like you need to go right now?” I said no not really. I meant it wasn’t urgent that I went right then. She did the ultrasound and my bladder was 2/3 full. The doctor came in and I told her that the nurse should have asked the right questions such as do you feel your bladder is empty or could you go right now.
    Still, this doctor wanted to wean me off the oxybutynin I am on now because she said if taken over a long period of time it will damage the nerves. It’s one of the only things keeping me sane!
    Which reminds me what I probably should have started out saying? I had surgery in 2005 for endometriosis because no one could figure out what was wrong with me. He said he wanted to cut my pre-sacral nerve because it helps with the abdominal pain. I talked with someone I knew and she said it was the best thing she ever did. He said the only side effect is constipation. I said sign me up because at that time I was having the opposite problem with IBS. He also found a millimeter malignant carcinoid tumor on my appendix but since it was so small I did not have to have any treatment for it.
    A few days after the surgery I had my first EVER UTI! Basically they have not stopped since that time along with the IC.
    I looked on the list of doctors and there a NP I am thinking about seeing in Knoxville if possible since it has the little blue ribbon by it. Does anyone have any knowledge of her?
    I so want to feel better at least in my bladder!
    I already have enough other things to deal with.

  • #2
    You never mentioned if you are on the IC diet?
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    • #3
      I was just going to ask the same thing.

      I wouldn't completely discount the doctor that wanted to switch you to a different medication --- there may be something else out there that will help without the potential side effects.

      Sending healing thoughts,
      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

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      • #4
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        Yes, I am on the IC diet. Thanks so much for your responses.

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