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Diagnosed about a year ago and have some questions for the veterans of IC

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  • Diagnosed about a year ago and have some questions for the veterans of IC

    I was diagnosed about a year ago during a dystention and cystoscopy. After that I didn't have any problems for about 8 months. Problems started back and the dr. did another dystention/cystoscopy for therapeutic reasons since the meds and cocktails weren't really working. My question this: My discomfort level and SO much better since the last dystention/cystoscopy but there is still some discomfort there. Manageable but it's there. With IC is there always some level of discomfortable or irritation feeling? It's like I'm constantly aware of my bladder and where it is. Does this make any sense??? I feel crazy! Any input is greatly appreciate! Thanks!

  • #2
    It's only been a year for me my discomfort is on and off, right now no discomfort. Every icer is different I wish you the best of luck make sure you stick with the IC diet.
    <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


    • #3
      It has been 13 years since I was diagnosed and the first 9 years were spent blissfully unaware of my bladder until it was properly full of urine I had a flare in 06, was put on Elmiron, went into remission until 07, was put on Hydroxizine, went into remission until 2 weeks ago. So yes, there has been several years where I was symptom free including the years when my children were born by C-section. Are you currently on any meds or supplements for IC? Some of those may bring you into complete remission of your symptoms
      Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

      “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus


      • #4
        I keep hearing about the fact that remission is possible but I'm not exactly sure what that means. If the symptoms go away, do you still have to keep taking the medications or can you go off them at that point?
        Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

        Current medications/treatments:
        Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

        Previous medications/treatments:
        Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek


        • #5
          During hydrodistension small nerves are stretched. By the time the nerves re-establish themselves, the patient’s pain can be much decreased, but the IC is still there, it's just a trick.


          • #6
            A true remission means that no meds are needed. However, some people consider themselves to be in a "medicated" remission if their meds work so well that they cover the symptoms completely.


            • #7
              My IC was diagnosed 36 years ago and hydrodistention has been a major treatment for me. I always have more frequency than most people and, yes, I am aware of my bladder most of the time --- but I've become so accustomed to it that I'm not certain how I would react if I suddenly didn't feel it.

              My last hydro was in October 2009 --- I have an appointment with my uro on the 13th and will probably schedule a hydro shortly after.

              Stay safe

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              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