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  • My Story

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    Hi, my name is Derek and I'm new to this site.I was diagnosed with IC when I was 15 I'm 20 now.
    I have been through the gamet of treaments from 6 or 7 Hydr's to all the various drugs,Elimron,antidepressants,Viadin, Tylenol-3,Anexia.Nothing has given me much if any relief, my pain had gotten so bad that I was willing to try most anything. At the first of the year I heard about Interstem Therapy and was convinced by the Dr. it would rid me of my pain so I had the test one done. I experinced excuriating pain right away the Dr. kept telling me that it was only surgery pain and it would go away.I did receive releif from the frequency but because of the other pain I couldn't tell if it helped the bladder pain.I went ahead and had the permanant one put in on May 26,2002 but the pain I was having never went away.After numerous visits to the Dr. and calls to him about the pain and his instance that I couldn't have that mush pain or I'd be crawling into his office I decided to return to my orignal urologist.He was not doing Interstem at the time I had mine.After consulting with Medtronic who makes the Interstem it was decided that the electrode was either defective or placed in in the wrong place.So in July I had the electrode removed and because my nerves where so irritated they didn't put a new one until Aug.about 2 weeks after that I developed a severe infection in one of the incisions and had to be hospitalized for 3 days they wanted to keep me longer but I couldn't stand it in there.By Oct. I decided to try another Hydro to see if I could gain some relief from the pain but I think it made things worse.I under went another surgery on the 18 th of Oct. they replaced the electrode again because my toes were curling so bad I couldn't walk.I am getting relief from the frequency but I am still not getting any relief from the pain.I am taking Elimron and Elivil at this time to see if the combo will help.I had my own business but because the pain got so bad I wasn't able to service my dealers I lost all my accounts I went to work for some one but I have been unable to put in a full day since Aug. so they put me on an unpaid medical leave.I had a house built back in at the first of the year and got married in May, moved right into my house because I couldn't afford a honeymoon nor did I feel up to going on one.Needless to say my wife has her hands full I'm afaird I haven't been able to be a very good husband what with not being able to work and being in so much pain all the time. Today is not too bad so I thought I'd put my story on the message board in hopes that someone who tried something I haven't could help me.I just saw a thing about a new med called Csyta-Q and when I called about it they said they would send me a months supply free to see if it works so I ordered it hope it helps.I've been told the only other thing they could do fro me is a bladder replacement, they make a new bladder from your intestines.This is something I don't even want to consider I've heard to many horror stories about people who've had it done and they still have the pain.Well that's all folks for the time being.
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  • #2
    WOW! Youhave been through alot! I am sorry you are in so much pain and I hope you find relief soon!
    ***Missie***

    ~~To The World You May be One Person, But To One PErson You May Be The World~~

    Comment


    • #3
      I hope your tomorrow will be a better day.

      Warm hugs,
      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

      Comment


      • #4
        I am having alot of problems with my Dr. right now he doesn't want to beleive I just might one of those people who after trying everything at their disopsal they haven't received any relief from the pain.He seems to think it's all in my head and that I'm just addicted to anexisa.Well guess what Doc I am willing to try anything to be off drugs that was why I put myself through all those horriable interstim operations sOOOOO I could get releif from the pain.I'm going to a pain clinic next week to see if I can get some help.I was wondering though if anyone has found a truly understanding URO one that will admit that IC pateints really do have excurcating pain.I live in Michigan near the cities of Flint, Saginaw, and Bay City so if anyone out there has found someone they like please let me know.Thanks Der

        Comment


        • #5
          There are some physicians in Michigan listed on this site. All of the physicians listed her have been recommended by other IC patients.
          http://www.ic-network.com/md/doctorlistings.html

          Warm hugs,
          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

          Comment

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