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I wrote in to the Dr Oz show about IC , let me know what you think

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  • I wrote in to the Dr Oz show about IC , let me know what you think

    I wrote in to the DR Oz show because on another post someone suggested to get it out there and I thought that was a brilliant idea ! So I went to the " Share my story " section of the website and heres what I wrote , let me know what you guys think



    Dear Dr. Oz,
    My name is Lauren and I am a 31 yr old female with a debilitating condition called Interstitial Cystitis . Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown. The condition is usually diagnosed by ruling out other conditions (such as sexually transmitted disease, bladder cancer, and bladder infections).IC is frequently misdiagnosed as a urinary tract infection. Patients often go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made.Women are 10 times more likely to have IC than men.
    Symptoms

    * Pain during intercourse
    * Pelvic pain mild to severe
    * Urinary discomfort mild to severe
    * Urinary frequency (up to 60 times a day in severe cases)
    * Urinary urgency
    There is no cure for IC, and there are no standard or consistently effective treatments. Results vary from person to person. As long as the cause is unknown, treatment is based on trial and error until you find relief.
    Other medicines may include:
    * Elmiron is the only FDA approved medication for IC , although it does work for all patients
    * Opioid painkillers for severe pain
    * Tricyclic antidepressants such as Elavil (amitriptyline) to relieve pain and urinary frequency
    * Vistaril (hydroxyzine pamoate), an antihistamine that causes sedation, helps reduce urinary frequency
    Other therapies include:

    * Bladder hydrodistention (filling bladder with fluid)
    * Bladder training (using relaxation techniques to train the bladder to go only at specific times)
    * Instilled medications - medicines are placed directly into the bladder. Medicines that are given this way include dimethyl sulfoxide (DMS), heparin, Clorpactin, lidocaine, doxorubicin, or bacillus Calmette-Guerin (BCG) vaccine.
    * Physical therapy and biofeedback (may help relieve pelvic floor muscle spasms)
    * Surgery, ranging from cystoscopic manipulation to bladder removal (cystectomy)

    I am writing to you because many doctors do not seem to know or have a true understanding of this condition , it can can absolutely be DEBILITATING. I know because in September 2010 I won my permanent disability w Social Security and I am young . This condition and many other secondary issues that go along w IC has ruined my quality of life . At this point my doctors do not know what else to do for me except to remove my bladder entirely but they say that will do nothing for my intense constant pain , only my frequency ( I urinate upto 80 times on a "bad day" and on a " good day" up to 50 or 60 times ). It took me over 4 yrs and over 27 doctors to figure out why I had chronic pelvic pain . These doctors ranged from Gynocologists , General surgeons (they removed my appendix just because I was in pain even though my appendix was fine ), Primary Care Physicians , GI specialists , Urologists , Endocrinologists , Pain management specialists who still refuse to treat me because " Chronic Pelvic pain is not a real issue". NONE of them knew what was wrong w me , alot of them were downright hurtful and have said to me " Stop being such a silly pathetic girl , nothing is wrong with you , stop wasting my time " to " Its not real , its all in your head " or " Its obvious that you are drug seeking " and " It says here that you have been depressed , so continue taking your Anti-Depressant meds and it will all go away " and many more . This is not uncommon w my condition , I belong to an amazing web support group " ICnetwork.com" and 90% of these women and men and parents of young children w IC have many horror stories of indifference , neglect , uncompassionate and downright baffled doctors . We are tired of not being heard and thought if maybe you worked IC into an episode that maybe doctors and people alike would begin to understand the magnitude of this disease and how it can destroy so many lives . Thank you for taking the time to read all of this , I hope you can help us be heard .
    Sincerely ,
    Lauren Myers


    Lauren

  • #2
    Just resent that story to the "Doctors show " on CBS in my area


    Lauren

    Comment


    • #3
      Good Luck, it would be good if they had actual IC patients on the show to speak about their experiences.
      Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

      I have moderate-severe IC

      Currently stopped taking all medications due to pregnancy

      Comment


      • #4
        I forget which one but one of the shows I sent it to had a check box if the sender be interested in being on the show , I checked yes


        Lauren

        Comment


        • #5
          Lauren,

          Don't know if you fixed it, but you stated Elmiron does work for all patients.

          Comment


          • #6
            I caught that thing about the Elmiron too. I really liked all the other stuff. I wasn't helped by Elimron at all and I was on it for a year. I cost me a lof of $. It made my hair thin out and I already have super thin hair. My experience of being on it wasn't good. I was really, really hoping it would be the answer and was so disappointed when month after month I continued to have the same pain and have to be on painkillers.
            But you did a fantastic job and it really explains it well!! I don't want to overshadow that with my negative attitude about the Elmiron. Good luck with it!

            Comment


            • #7
              I want to know if your letter ever ends up doing any good. Hey! I do hope so. You did cover it good enough. Yep!

              Comment


              • #8
                I wrote him too. I think more of us should write him, power in numbers!!
                www.droztv.com if you are interested.
                treatment:
                -I follow the IC diet to the letter
                -acupuncture and chinese herbs
                -Prelief
                -UTA
                -instillations as needed
                -beginning yoga and specialized yoga for breathing and relaxation
                -Wellbutrin
                -Klonopin


                main symptoms: pain and burning

                Comment


                • #9
                  I did realize that mistake , should I send another notice to the doctor shows stating that mistake ? Or if I get a response approach it then ?


                  Lauren

                  Comment


                  • #10
                    I will definitely let everyone know if I get a response whether its a " NO THANKS " or a " YES WE ARE INTERESTED " Im praying for the positive response though lol I know many have already tried this , but maybe if we can try to flood these shows w emails , it might have more of an impact ? Im not sure , but honestly I have nothing but time on my hands thanks to this damn condition so Im going to keep trying


                    Lauren

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