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  • All you need is hope... and Elmiron!

    Hi everyone!

    My name is Joelle, I am 28 years old, and I have finally found the courage to share my story. Like most of you, I used to come to this inspiring and encouraging website to learn more about the IC disease and to feel part of a community, people as understanding and empathetic as all of you.

    Positive first, story second!
    I am thrilled to say that I am currently on a successful Elmiron plan. I am most of the time pain free. You can be too, I am positive of this!

    Now my story:

    When I was 26, I was a happy camper. I loved my life, my job, my family, my friends. I was enrolled at school to begin a masters program, I had a life plan. Suddenly, on July 1st 2009, I was succombed by sharp pains in my bladder. Being almost 100% confident that I had a bladder infection, I immediately went to the clinic. The test results came back negative, however, the doctor did find irregular red blood cells. I was told it would pass on its own. Well, it did not. I went to see 3 more doctors. Same outcome. I was put on antibiotics just in case, which only made my situation worse. I became extremely ill and my condition only worsened. In the next two months, I visited the emergency room at several different hospitals multitudes of times. The pain in my bladder was indescribable. I remember feeling petrified, mostly because test results were inconclusive, yet I was certain something was very wrong. Doctors put me on even more antibiotics, that again, only made me even more sick.

    Then, one less than kind ER doctor said something about IC and referred me to a urologist. As soon as I got home, I researched IC and was crushed from what I read. There was no way I had this illness, no way. I met with the urologist who essentially told me that I had more chances of being run over by a car on my way home from the appointment than to have IC. I felt a tad relieved, particularly because the articles I was reading about IC confirmed that the illness is not curable and very difficult to treat. Still no diagnosis. The more the days past, the worse the pain became. I was misdiagnosed at least 4 times. The doctors assumed I had Osteitis Pubis, which is a pelvic injury football players suffer from. Already, it was difficult to put two and two together here. I was put on anti-inflammatories for 6 months and was told that it could take up for a year to heal. The anti-inflammatories did absolutely no good. The doctors also thought I could have kidney stones. I did have a stone in my kidney, but it was tucked in a corner and was not bound to pass any time soon.

    At this point, I had to withdraw from my masters program as I was unable to concentrate with the pain and anxiety. I found myself constantly returning to the IC-network website. The words and symptoms strangely resonated with mine and one day I accepted that I most probably suffered from IC. I was determined to get help. Most doctors shut the door on me, telling me that IC did not exist. I went through several painful cystoscopies and urethral dilatations, all unsuccessful. Then, finally, I found a urologist that actually had a poster of IC... hope immediately overwhelmed me. This doctor told me he has never seen anyone my age with IC and was reluctant to treat me for it. Perplexed, he told me that all my symptoms relate to IC: severe inflammation of the bladder, sudden frequent urination, inability to empty bladder, painful intercourse, and the list goes on. All symptoms I never dreamt of experiencing at such a young age. My doctor eventually diagnosed me with IC and started me on an Elmiron plan: 100mg, 3 times a day + 20mg fluoxetine. Knowing that the treatment, if helpful at all, would take 6 months to a year to take affect, I had to keep busy, and I had to keep hoping. I seeked therapy to find solace in the pain I was feeling 24 hours a day. I talked to friends, family, and caught up on all my favorites TV series! Note to all of you, in a time of intense pain, watch FRIENDS... you'll be instantly brought into a world of pure laughter and fun. In a way, FRIENDS saved my spirit. I was lucky as well to have an incredibly supporting boyfriend who stuck with me through thick and thin. Unable to have intercouse, there were times when I was sure he would leave me. Lucky enough, that was not the case.

    To change my thoughts, I decided to apply for jobs. I was offered an incredible position that I could not refuse. While waiting for the Elmiron to take effect, I started working again. It was incredibly difficult for my pride. I kept on looking at those around me, those normal people, remembering that I used to be one of them. I had to cut a huge amount of food out of my diet, I couldn't wear heels (for those who know me, I LOVE fashion!), BUT I refused to let go of the hope of one day returning to my normal self. So I would work, go home, take codeine, and sleep at 7 pm. As the days went by the pain started subsiding. I had a goal: to wear heels, and dance the night away at 6 of my friends' weddings that summer. I am proud and happy to say that I danced my heart out!!! Now, a year after my diagnosis and the start of my Elmiron plan, I am, on most days pain free. When the pain does come, I know how to handle it, and it is nowhere near the pain I used to feel. I still need to work on building my confidence again when it comes to intercourse. I'm always afraid that it will bring back my IC pains, which is sometimes does, but I am confident that with time, things will get better in that department.

    I am forever grateful to this website. It taught me how to alter my diet, it allowed me to connect with people who were in the same boat, and it gave me courage to power through.

    To those currently suffering, the key is to find an empathetic doctor. I have not found one yet, but that's my mission! Exercise patience and be vocal about what you are going through. I retracted and dealt with most of it on my own, which makes it all the more difficult. I believe that you all can get through it. I'm here to answer any questions you may have.

    Joelle
    xx

  • #2
    Thank you for sharing your success.

    Huge 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


    • #3
      love your story. hope youre in remission for good.
      Newly IC diagnosed as of February 2011.

      Medications I'm on that seem to work:
      Zoloft- one once a day
      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

      Failed Meds:
      Elmiron-after 4 months,digestive side effects got to be too much
      tramadol-allergic
      DMSO treatments(5-6)
      probiotics

      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
      AROMATHERAPY-candles,incense
      Village Naturals Aches and Pains Peppermint Bath Salts
      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

      ACUPUNCTURE/HERBS
      Significant pain relief so far.

      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

      Add me on facebook Angela Hasic

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Lord, make me an instrument of your peace;
      where there is hatred, let me sow love;
      when there is injury, pardon;
      where there is doubt, faith;
      where there is despair, hope;
      where there is darkness, light;
      and where there is sadness, joy.
      Grant that I may not so much seek
      to be consoled as to console;
      to be understood, as to understand,
      to be loved as to love;
      for it is in giving that we receive,
      it is in pardoning that we are pardoned,
      and it is in dying [to ourselves] that we are born to eternal life.

      Comment


      • #4
        Re: All you need is hope... and Elmiron!

        Hi Joelle,

        I'm not sure you'll get this, but I really identify with your story. How are you? Are you still doing well?

        Regards,

        -Maryanne






        Originally posted by Joelle View Post
        Hi everyone!

        My name is Joelle, I am 28 years old, and I have finally found the courage to share my story. Like most of you, I used to come to this inspiring and encouraging website to learn more about the IC disease and to feel part of a community, people as understanding and empathetic as all of you.

        Positive first, story second!
        I am thrilled to say that I am currently on a successful Elmiron plan. I am most of the time pain free. You can be too, I am positive of this!

        Now my story:

        When I was 26, I was a happy camper. I loved my life, my job, my family, my friends. I was enrolled at school to begin a masters program, I had a life plan. Suddenly, on July 1st 2009, I was succombed by sharp pains in my bladder. Being almost 100% confident that I had a bladder infection, I immediately went to the clinic. The test results came back negative, however, the doctor did find irregular red blood cells. I was told it would pass on its own. Well, it did not. I went to see 3 more doctors. Same outcome. I was put on antibiotics just in case, which only made my situation worse. I became extremely ill and my condition only worsened. In the next two months, I visited the emergency room at several different hospitals multitudes of times. The pain in my bladder was indescribable. I remember feeling petrified, mostly because test results were inconclusive, yet I was certain something was very wrong. Doctors put me on even more antibiotics, that again, only made me even more sick.

        Then, one less than kind ER doctor said something about IC and referred me to a urologist. As soon as I got home, I researched IC and was crushed from what I read. There was no way I had this illness, no way. I met with the urologist who essentially told me that I had more chances of being run over by a car on my way home from the appointment than to have IC. I felt a tad relieved, particularly because the articles I was reading about IC confirmed that the illness is not curable and very difficult to treat. Still no diagnosis. The more the days past, the worse the pain became. I was misdiagnosed at least 4 times. The doctors assumed I had Osteitis Pubis, which is a pelvic injury football players suffer from. Already, it was difficult to put two and two together here. I was put on anti-inflammatories for 6 months and was told that it could take up for a year to heal. The anti-inflammatories did absolutely no good. The doctors also thought I could have kidney stones. I did have a stone in my kidney, but it was tucked in a corner and was not bound to pass any time soon.

        At this point, I had to withdraw from my masters program as I was unable to concentrate with the pain and anxiety. I found myself constantly returning to the IC-network website. The words and symptoms strangely resonated with mine and one day I accepted that I most probably suffered from IC. I was determined to get help. Most doctors shut the door on me, telling me that IC did not exist. I went through several painful cystoscopies and urethral dilatations, all unsuccessful. Then, finally, I found a urologist that actually had a poster of IC... hope immediately overwhelmed me. This doctor told me he has never seen anyone my age with IC and was reluctant to treat me for it. Perplexed, he told me that all my symptoms relate to IC: severe inflammation of the bladder, sudden frequent urination, inability to empty bladder, painful intercourse, and the list goes on. All symptoms I never dreamt of experiencing at such a young age. My doctor eventually diagnosed me with IC and started me on an Elmiron plan: 100mg, 3 times a day + 20mg fluoxetine. Knowing that the treatment, if helpful at all, would take 6 months to a year to take affect, I had to keep busy, and I had to keep hoping. I seeked therapy to find solace in the pain I was feeling 24 hours a day. I talked to friends, family, and caught up on all my favorites TV series! Note to all of you, in a time of intense pain, watch FRIENDS... you'll be instantly brought into a world of pure laughter and fun. In a way, FRIENDS saved my spirit. I was lucky as well to have an incredibly supporting boyfriend who stuck with me through thick and thin. Unable to have intercouse, there were times when I was sure he would leave me. Lucky enough, that was not the case.

        To change my thoughts, I decided to apply for jobs. I was offered an incredible position that I could not refuse. While waiting for the Elmiron to take effect, I started working again. It was incredibly difficult for my pride. I kept on looking at those around me, those normal people, remembering that I used to be one of them. I had to cut a huge amount of food out of my diet, I couldn't wear heels (for those who know me, I LOVE fashion!), BUT I refused to let go of the hope of one day returning to my normal self. So I would work, go home, take codeine, and sleep at 7 pm. As the days went by the pain started subsiding. I had a goal: to wear heels, and dance the night away at 6 of my friends' weddings that summer. I am proud and happy to say that I danced my heart out!!! Now, a year after my diagnosis and the start of my Elmiron plan, I am, on most days pain free. When the pain does come, I know how to handle it, and it is nowhere near the pain I used to feel. I still need to work on building my confidence again when it comes to intercourse. I'm always afraid that it will bring back my IC pains, which is sometimes does, but I am confident that with time, things will get better in that department.

        I am forever grateful to this website. It taught me how to alter my diet, it allowed me to connect with people who were in the same boat, and it gave me courage to power through.

        To those currently suffering, the key is to find an empathetic doctor. I have not found one yet, but that's my mission! Exercise patience and be vocal about what you are going through. I retracted and dealt with most of it on my own, which makes it all the more difficult. I believe that you all can get through it. I'm here to answer any questions you may have.

        Joelle
        xx
        Health Issues
        IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
        Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
        Symptoms:
        I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

        Failed
        Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

        WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
        Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

        Comment

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