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  • My story

    3 posts, 2 voices, 777 views, started Oct 8, 2008

    Posted on Wednesday, October 8, 2008 by Dianne67

    •  



    • Aquamarine
      Offline

      THIS STORY WAS WRITTEN TO POST ON A SUPPORT GROUP FOR IC THAT I LED WHEN I LIVED IN NJ.  IT WAS WRITTEN PRIOR TO MY DIVORCE.  I WAS THE LEADER FOR 2 YEARS FOR THE NORTH JERSEY IC SUPPORT GROUP; BUT WITH THE DIVORCE, MY FIBROMYALGIA WORSENING AND THE MOVE, I COULD NO LONGER LEAD THE GROUP.

      MY IC IS CURRENTLY CONTROLLED BEST WITH THE DRUG, NEURONTIN AND VALIUM FOR VERY BAD FLARES.  YOU CAN ALSO CRUSH THE VALIUM AND MAKE A PASTE WITH A SEXUAL LUBRICANT AND PLACE IT IN THE VAGINAL AREA FOR MORE IMMEDIATE RELIEF.  BEFORE DOING ANY OF MY SUGGESTIONS PLEASE SPEAK WITH YOUR DOCTOR FIRST.  

      I WOULD BE HAPPY TO HELP ANYONE SUFFERING FOR THIS ILLNESS.
      IT IS COMMON FOR THOSE THAT HAVE IC TO HAVE FMS AS WELL AS OTHER AUTOIMMUNE DISORDERS.

      APRIL 8, 1997, AT THE AGE OF 30, WAS THE DAY THAT I FINALLY RECEIVED A DIAGNOSIS FOR THE PAIN I WAS SUFFERING WITH FOR SO VERY LONG. MY DOCTOR LEFT A NOTE WITH THE NURSE SAYING I HAD INTERSTITIAL CYSTITIS, A CONDITION THAT I HAD READ ABOUT DURING MY RESEARCH. HORRAY! I FINALLY HAD CONFIRMATION THAT THE PAIN I WAS FEELING WAS NOT IN MY
      HEAD AND THAT SOMETHING WAS PHYSICALLY CAUSING IT. I WAS NOT
      CRAZY...AND, NOW MAYBE I COULD GET HELP.

      FOR THE NEXT 7 YEARS, I TRIED EVERYTHING...DMSO, BCG TREATMENTS, HOLISTIC THERAPY, DIETARY CHANGES, ACCUPUNCTURE, YOU NAME IT, AND I‘VE PROBABLY TRIED IT. I WAS DESPARATE TO FEEL GOOD AGAIN, AND I WAS WILLING TO TRY ANYTHING THAT COULD POSSIBLY TAKE THE PAIN AWAY.
      I PUT MY TRUST IN MY UROLOGIST, AND I WAS WILLING TO DO WHATEVER WAS EXPECTED TO FIND “A CURE” FOR MY PAIN. GRANTED, THERE WERE TIMES WHEN I FELT A LITTLE BETTER, BUT NOT A DAY WENT BY THAT I WAS NOT REMINDED OF THIS ILLNESS. THE PAIN WOULD COME AND GO WHEN I LEAST EXPECTED IT—WITHOUT ANY WARNING, INTERFERING WITH MY LIFESTYLE I HAD BEFORE THE ILLNESS.

      I NOT ONLY HAD PAIN, BUT I HAD BOUTS OF EXHAUSTION, AND FATIGUE TO THE POINT OF COLLAPSE. AT THE VERY WORST TIMES OF MY DISEASE, INTERCOURSE WITH MY HUSBAND WAS PAINFUL. IF I WASN‘T IN PAIN DURING THE ACT, I WOULD HAVE PAIN AFTERWARDS THAT WOULD LAST FOR DAYS. THERE WERE TIMES WHEN MY TEETH CHATTERED WITH THE AGONY OF THE PAIN.

      DURING THESE TRYING TIMES, I FELT THAT NO ONE REALLY UNDERSTOOD WHAT I WAS GOING THROUGH—THEY COULDN‘T UNLESS THEY HAD IT TOO. A LOT OF WHAT I WAS GOING THROUGH, I KEPT A SECRET BECAUSE IT WAS ALL SO PERSONAL. HOW DO YOU TALK TO PEOPLE ABOUT SUCH AN INTIMATE AND EMOTIONAL SUBJECT. INSTEAD, I SPENT HOURS IN FRONT OF THE COMPUTER SEARCHING FOR ANSWERS, SEARCHING FOR A CURE, AS I CRIED AND FELT
      HOPELESS. AT TIMES, I EVEN BLAMED MYSELF FOR GETTING THIS AGONIZING CONDITION.

      IN THE SUMMER OF 2003, I ATTENDED THE NORTH JERSEY SUPPORT GROUP MEETING. I LOOKED FORWARD TO THIS DAY BOTH ANXIOUS AND NERVOUS TO BE IN A ROOM WITH OTHERS THAT WERE DEALING WITH THE SAME PROBLEM I HAD. MY HUSBAND ATTENDED THE MEETING WITH ME, AND I REMEMBER AS I SAT THERE HOW UTERLY SAD I FELT FOR MYSELF AND EVERYONE ELSE WHO SAT WITH
      ME AS THEY SHARED THE SAME EXPERIENCES THAT I WAS GOING THROUGH.

      IN THE FALL OF 2003, I ATTENDED MY SECOND SUPPORT GROUP MEETING. I WAS LOOKING FORWARD TO THE MEETING BECAUSE I NO LONGER FELT AS ALONE. DURING THE MEETING, I DECIDED IT WAS TIME TO SWITCH UROLOGISTS TO FIND OUT IF A DIFFERENT PHYSICIAN WOULD KNOW OF BETTER TREATMENT OPTIONS. THIS WAS THE BEST DECISION I COULD HAVE EVER MADE.

      IN MARCH OF 2004, I WENT TO SEE DR. ERIC MARGOLIS, AND WE DISCUSSED IC AND THE AFFECT IT HAD ON MY SEXUALITY AND MY INTIMATE LIFE. I FELT LIKE ONLY HALF OF A PERSON FOR SO MANY YEARS. I WAS ON A SEARCH TO FIND THE HALF OF MYSELF THAT I HAD LOST. I NEEDED TO SEE IF I COULD BE HELPED.

      AFTER MEDICATION CHANGES AND PHYSICAL THERAPY WITH NANCY
      MASKEL TO LEARN HOW TO RELAX MY PELVIC FLOOR, THAT PART OF MY CONDITION HAS IMPROVED CONSIDERABLY. I REALIZED THAT I FELT MORE CONFIDENT AND COMPLETE.

      I WAS OFFICIALLY DIAGNOSED WITH FIBROMYALGIA IN MAY 2004, WHICH I HAVE HAD SYMPTOMS OF FOR MANY YEARS. I AM UNDER THE CARE OF A PAIN DOCTOR FOR THIS ILLNESS AND I HAVE HAD SOME MUCH NEEDED IMPROVEMENT IN MY SYMPTOMS WITH MEDICATION.

      MY BEST ADVICE IS TO NEVER SETTLE. IF YOU DON‘T FEEL THAT YOUR PHYSICIAN IS LISTENING TO YOU OR TAKING THE TIME TO UNDERSTAND YOUR NEEDS, IT IS TIME TO GET ANOTHER OPINION.

      HUGS,
      DIANNE



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        • 0 votes vote up vote up

          Owlmaria wrote Jan 26, 2009
        • Dianne, If you check w/ “Chronic Bladder Pain & Kidney Pain” you’ll see we have a lot in common. I also have IC, but I’ve been told that for the true diagnosis, you have to have the “surgery” *& the Dr. looks @ the tissue to say it’s IC. Just had a bladder biopsy- the good news- No cancer, the bad new- they don’t know why I’m having so much trouble. Thanks for listening.



                Report  Reply


        • 0 votes vote up vote up

          Owlmaria wrote Mar 14, 2009
        • Dianne, when you wrote DMSO was it the same as the Rimso (bladder wash ) treatments I’ve began receiving? They are very painful & I just don’t know if I can take another one. They don’t seem to be helping me.



                Report  Reply



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