No announcement yet.

Painless for 5 years!!!

  • Filter
  • Time
  • Show
Clear All
new posts

  • Painless for 5 years!!!

    I was diagnosed with IC at the age of 13. I was in severe pain the majority of the time. I managed to graduate high school with honors, but that was due to the support and understanding of my teachers. I could barely make it to class.
    I tried every medication they could come up with, Elmiron, anti-depressants, pain medication. I was on Methadone for pain as a narcotic at 15. The Duragesic Fetanyl Patch was the only thing that worked close to as well as that. I spent all four years in high school and two years in college on these narcotice. They made me a different person. I was like a zombie and always tired. I was also extremely depressed.
    This isnt something that is easy to deal with at any age, let alone as a young teenager. Five years a go, I spent the week before Christmas, at the ripe old age of 20, in the hospital having my bladder removed and replaced with part of my small intestines. It was our only hope, the pain was too bad. None of the twenty-something surgeries I had done prior had even begun to help.
    Its been five years now without the severe pain of the Interstitial Cystitis!!!! I have been able to live my life! I spent two years travelling the world, being that I couldnt even make it out of bed for the seven years prior. The surgery was not easy and I would not recommend it for everyone, but it was my light at the end of an extremely dark tunnel.
    There were multiple complications with the surgery. A day after arriving home from having it I ended up back in the hospital, where I remained for Christmas and New Years. My friends and family really helped me through the severe pain and lond recovery. I spent a few months in pain, hoping that this would work.
    Now five years later I do have some pain in my kidney area (I have a doctors appointment for it next week). I also have UTI's about 3 times a year, but the pain is very minimal and I know as soon as I have one. Bactrum or Amoxycillin always help. I also do have to catheterize a couple times a day, but can urinate normally as well. I do this just to make sure to completely empty the bladder. Its very easy for me, and really doesnt affect me at all.
    I remember sitting in my bedroom at my parents house at fifteen, crying and wondering if this pain would be forever. I just want to let people out there know that its not. Find a good doctor. It took me multiple tried. At 14 I heavily researched IC and knew everything I could about it. I asked all the questions I needed. I found many doctors frustrated and confused as to what they should do. I saw many specialists, and I found a urologist that knew what he was talking about. I saw hime so much he became like family, but it is because of him that I am able to live a normal life today.
    It can get better! It may take medicine, or surgery, but there is something. It helped to speak with people who went through the same disease I did. Everytime anyone told me they understand what I was feeling, I would get angry, until I spoke with people who did.
    I just want people with IC to know that there is hope out there. Its not going to last forever. It is excruciatingly painful, and I would not wish it on anybody, but there is hope. I am very, very, lucky to have been able to find the doctors I did and have this surgery, and everyday I wake up knowing that! I hope everyone can find relief like I did!

  • #2
    Thank you for sharing your success.

    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    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:


    Diet list:

    AUA Guidelines:

    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


    • #3
      painless for five years

      It's wonderful that you found something that worked so well for you and impressive, that age 14, you were doing all that research and had so much knowledge.
      Thanks for posting your positive story.


      • #4
        Thank you for sharing your story. I am glad you are doing so well. It is very impressive that you did so much research on your own at such a young age. I think learning everything possible about IC is the key to getting better and regaining a pain free life. I am not there quite yet but I do have many more good days than bad lately.

        I wish you continued good health.

        Link to the patient information, everything from What is IC? to Disability

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


        • #5
          Thank you for having the courage to undergo this operation. It is inspiring that you are now pain free. From what I read, it sounds like a long recovery, but living with severe IC is no way to live and worth the minor complications of surgery.
          DX w/ IC in 2002. Received disability for IC in 04. Have severe IC. Hunner uclers, high frequency, moderate arthritis in lower back, severe Pelvic floor dysfunction. Anxiety due to changing amounts of pain meds. Hips misalignment (left leg 1/2" shorter).
          Past treatments: dmso and heparin instillations-in severe pain 24 hours afer emptying, hydrodistensions very painful because of ulcers, interstim twice--both failed due to infections at battery sight. PTNS-didn't reduce frequency. Botox jan 09 in bladder and pelvic floor and steroids placed on uclers. Burning pain 3 weeks after procedure but helped 30% with frequency and 50% with pain and spasms. Botox june 09 in bladder only and steriods injection into ulcers. Not as painful afterwards, put had to bear down to urinate which caused severe tightening of pelvic floor. Helped again with freq and pain. Tried physical therapy past 4 years. Has helped over time. On a regular basis I get deep tisssue massages, acupuncture and see a chiropractor. Had 3 caudal nerve blocks. Slightly improved PFD. Had Sacral nerve streriod injections on boh sides of buttocks. Helped with lower back pain, hip and buttock pain. Pudental nerve block 9-13-09. Severe pain 2 days following. No help with PFD. Steroid injections April 2010. Helped relieve some of the pain and frequency. Pelvic floor lidocaine injections May, August 2010. Noticeable relief of trigger point pain. Steroid injection into hunner ulcer August 2010. Very helpful.

          Current meds: percoset, ambien, trazedone, klonopin, flexeril and norethindrone (to control endometriosis). Probiotics and a high fiber/low sugar diet helps help with constipation.
          Meds that didn't work or had adverse side effects: elmiron, elavil, lyrica and several others.
          On a daily basis I walk 2-5 miles, pray and meditate. All of this gives me tremendous strength and energy in both my mind and body.