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just received an IC diagnosis

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  • just received an IC diagnosis

    Hi everyone. I have been reading the posts on this site for a long time but never posted myself. I am having a hard time lately so I thought maybe I'd give it a shot.

    I am a 29 year old male living in Alaska. I first started having bladder issues in 2007 after a bad kidney infection. At that timethe problem was confined to frequency and lasted about 2 months. My primary care doc chalked it up to damage from the infection. I had episodes of frequency on and off for the next couple years, but never sought treatment.

    The real trouble started last August. I can literally remember the second it began. I was at my desk and realized I had to pee, so I went. However, I still had to pee. My doc thought I had an infection and put me through a couple rounds of antibiotics, which did nothing. Over the next couple of months I had to pee about every 15 minutes.

    My primary care sent me to a urologist, who put me on several different overactice bladder mess, but nothing worked. I had an in office cystoscopy and urodynamic testing. Everything was clear. I asked the urologist about ic but he said ic was a very rare disease and it was very unlikely I had it.

    Around January my symptoms began to improve and by March I was totally symptom free. I thought I could put the whole terrible episode behind me.

    Unfortunately two weeks ago the frequency returned full force, but this time with abdominal pain that got worse as my bladder filled. I went to a different urologist and was prescribed Elmiron. It took 4 pharmacies to find one that had it in stock I only have a two week supply, and I am worried I will not be able to refill it. The urologist also prescribed another overactive bladder med. I am following the diet as well.

    I am really struggling with this. I can't handle the thought of going through this again. It took my life away last time. I couldn't hike or bike or go to the gym or do anything I like to do. For the past two weeks even sitting on the couch hurts. Work is hard. How do I cope with this?

  • #2
    Glad you have been researching this site. It is the best. Hopefully some of the guys will chime in & give you advice. Obviously your dr. ruled out a bladder infection. And you have started the diet which will help calm your bladder down. I am just going to suggest that you check out the treatment plans on here too. You can copy the info & take it to your dr. Many of us have had to see several urologists before one "clicked" for us. There are drugs that can supplement the elmiron like hydroxyzine, elavil, bladder instills,etc. Physical therapy for the pelvic floor has also helped with IC pain, frequency, & urgency.

    Above all, please try to have hope. I have come a long way since my Aug.08 onset & diagnosis. (I too remember the exact moment it started) I had to try alot of treatments & see several uros to get to this point. But most of us go on to do very well. Best of luck to you!

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    • #3
      I am surprised that your Uro has not tried DMSO or Rescue treatments. You need to ask your Uro about more options, I went through hell and back before I found the right Uro. Don't do like I did and be in severe pain for three months find a good Uro.
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      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
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      • #4
        Hi Sam,

        I am new to this too. I find it frustrating that I cant go out and live life like I used to and as active. I love to lift weights, run, hike, yoga, swim and I am so drained and need to rebuild my energy but as soon as I start, I get pain and I have to start all over again. I hope you find relief soon

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        • #5
          I'm glad you found this site.

          If you click on the Patient Information link in my signature below, you'll find a great deal of information about the various treatment options. Elmiron can take up to six months or longer to become effective so you will want to look at other treatment options in the meantime.

          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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