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Just this past summer...

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  • Just this past summer...

    It all began on the last two days of a wedding vacation in NC; I began peeing a lot more and I noticed some strain. I even joked with my husband that I knew it was a uti from the pool or hot tub and that we'd need to get to the doctor's as soon as we got home.

    Well, I was told that I had some microscopic blood in my urine and that they would do a culture just to be certain but treated me with antibiotics for the week. After that week, I felt just fine.

    Now, let me mention that during my vacation, I had an active outbreak of G. herpes. I knew that if I drank, had smoked, and laid in the pool that the infection would probably worsen, but it never hurt much before, and well, we were on vacation...my husband and I knew that we wouldn't have relations anyway since we were staying with friend in her room.

    After about a month, the symptoms returned. I went to my gynecologist and she, without having any other explanation, gave me a second round of antibiotics--didn't work.

    My family doctor as well as another urologist tried to tell me that it was simply overactive bladder-I couldn't believe it. Why did it start on vacation?

    By this point, I was getting worried, so I made an appointment with a urologist back home (family friend) and he performed a cystopscopy; I'm not quite sure if it was hydro because it didn't hurt, but fluid was placed in my bladder...he said and I saw that my bladder looked perfectly normal. ???
    A KUB was ordered as well as a renal US--normal. Urine culture--normal.

    Now this takes us to October...when I lost any good days and felt the need to urinate all of the time, most of the time moderate, sometimes mild. I've seen another urologist who performed urodynamics--she felt that I didn't have OAB but possibly PFD since my vaginal muscles seemed tight to her.

    So, here I am, in March. Since then I've had a broth culture--neg and bloodwork from a NP who claims that I have a form of a co-infection. I've been on antibiotics for a month with no help.

    I'm seeing an infectious disease doctor this week, and I'm going to follow up with my main urologist again. He wants to do a biopsy.

    I'm concerned that maybe the viral infection did this. Did I mess something up neurologically? I'm very confused. Any advice is appreciated!

    29, teacher, from PA.
    Maria



    Current medication: Soul-searching

    Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.





  • #2
    It's good that you will be seeing your urologist again. A biopsy could be the thing that gives you a diagnosis. If you do have IC, getting started on an IC diet and treatments could help you feel better.

    Warm 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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    • #3
      Thank you, Donna.

      The only thing that I have received as treatment was Elavil (made me feel confused, so I stopped taking it) and OAB pills, which were no help.

      I thank you for your reply; it means a lot!

      Best wishes to you!
      Maria



      Current medication: Soul-searching

      Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




      Comment


      • #4
        It does sound like you are on the right track going back to uro. I hope they find some solutions and treatments for you soon. The not knowing can be very frustrating.

        Sandra
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          Donna and/or Sandra,

          Have either of you had PFD therapy? A urologist from Hershey medical said that I ought to try this. I did ride a jet ski around this time when problems first occurred and then I lifted a lot because we moved into a house.

          Thanks, girls.

          What a roller coaster!
          Maria



          Current medication: Soul-searching

          Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




          Comment


          • #6
            Well I am not a Dr. but it sounds like it could very well be IC, did you mention this to your Dr's? Many people have IC and their bladders look normal. Sometimes they need the hydro w/ distention to see tiny pin pricks of blood on the bladder wall to make the diagnosis. If all the other tests are neg. I would start the diet and try to get on Elimron or buy Cystopretek yourself, it's sold here on this site and Amazon. I take that and stick to a strick diet and I am already feeling better.

            Comment


            • #7
              By this point, I was getting worried, so I made an appointment with a urologist back home (family friend) and he performed a cystopscopy; I'm not quite sure if it was hydro because it didn't hurt, but fluid was placed in my bladder...he said and I saw that my bladder looked perfectly normal. ???

              Hi,
              A regular cystoscopy in-office will often not show IC. My cystoscopy was normal too but based on symptoms my doctor is treating me with elmiron and an overactive bladder medicine. There are new guidelines in diagnosing and treating IC.

              Also, there are alot of people here who have had tremendous success with PT for PFD. I'd go ahead and follow up on that too since one of the urologists mentioned it to you.
              Cindi


              Gelnique for frequency/urgency - works great
              Macrobid after sex
              Prilosec, continuous birth control pills
              synthroid .088mg, mucinex-d, restasis

              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
              Great treatment flowchart on page 19 of the pdf

              Comment


              • #8
                Cindi,

                Can you tell me what the new guidelines are for diagnosing?

                thanks!
                Maria



                Current medication: Soul-searching

                Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




                Comment


                • #9
                  I have a few links below in my signature line, one is an overview by Jill here at ic network. The other goes to the actual pdf from the AUA. It covers diagnosing and treatment and various levels of treatment etc.
                  Cindi


                  Gelnique for frequency/urgency - works great
                  Macrobid after sex
                  Prilosec, continuous birth control pills
                  synthroid .088mg, mucinex-d, restasis

                  Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                  Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                  IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                  AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                  AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                  Great treatment flowchart on page 19 of the pdf

                  Comment


                  • #10
                    I'm another who's in-office cystoscopy showed a perfectly healthy bladder. My Uro said it wouldn't necessarily show IC but was a needed step to rule out other possible causes.

                    I'm sorry you're going through this. Many of us go through various diagnosis possibilities, tests, trying this med then that, before we finally arrive at our true diagnosis. It sounds like your doctors are searching, so that's good. I hope you find some answers soon!

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

                    Comment

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