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Living with Interstitial Cystitis

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Was healthy until …
by: ddscrazy on Wed, Mar 26 2008
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I had a hysterectomy and then got a hernia from doing to much afterward.Had hernia repair with mesh in2005 thenin 2006 had to have mesh taken out,repair hernia again and another mesh put in, still havong prroblems with the mesh and now have been diagnosed with I.C.

sometimes my belly swells up like I am 9months preg.and I beleive that my mesh inside of me is what started everyhing,want to take it out mt immune system keeps attacking it and thats what is causing my I.C. to flare up. Lots of Doctors think I am crazy but ladies we know our bodies!!Had the cyst.and hydro and thiught I was never be out of pain, It helped wit my need to urinate all the time but now I have another UTI Been takin Desert Harvest Aloe Vera,Buffered Vit.C bromalean, Querctain.Thinking of Elmiron(side effects scary hair loss) dont have as much as we used to thnks to the hormone thing,I am a young 56 year old woman and am finding this very depressing anybody have any suggestions??

Have heard of the drug Cystistat available in Canada but out of pocket expense is gettin very expensive!!Oh and I go everwhere with my prelief.Thanks for listening its always nice to know that we are not the only ones suffering from this awful disease.P.S. doesn’t take a rocket scienctist figure out that its a herditary gene my Mom had this it went undiagnosed I am very scared for my 27 year old daughter,this would be such a treatable disease if we could get the funding like AIDS,LUPUS,MS etc. Take Care and may all of our guardian angels look over out for us!!
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March 2008

  • botox and cystitis - by E - (Mon, Mar 31 2008)
    I had botox put into my bladder six months ago for I.C and it is the best thing i have ever done, i can now lead a normal life and am due my check up last day of march. [more..]
  • After 4 Yrs of IC Pain… - by Terri - (Thu, Mar 27 2008)
    And very poor support from Kaiser Permanente Urologists of Denver.. I finally hired one of Denver’s premiere “private” Urology Specialists to gain the proper IC diagnosis… Denver Kaiser Urologists didn’t care if I had an IC Diagnosis…! [more..]
  • Was healthy until … - by ddscrazy - (Wed, Mar 26 2008)
    I had a hysterectomy and then got a hernia from doing to much afterward.Had hernia repair with mesh in2005 thenin 2006 had to have mesh taken out,repair hernia again and another mesh put in, still havong prroblems with the mesh and now have been diagnosed with I.C. [more..]
  • Living with IC. - by AMG - (Mon, Mar 17 2008)
    I am a 27yr old female that was diagnosed with IC 7 years ago. I have seen 8 different urologists,some at the best hospital’s in Boston that specialize in IC. [more..]
  • IC - by VF - (Mon, Mar 17 2008)
    I was finally diagnosed with IC after years and years of being mis diagnosed. I am only 26 and it has taken over my life. Some days are good..some are bad and most of them are bad. [more..]
  • Not the fairytale begining… - by Elizabeth - (Wed, Mar 12 2008)
    I got married in October 2007 to an American soldier who had just spent his second tour in Afghanistan. While he was gone I was experiencing urgency and frequency as I have for the past ten years. In early January 2008 my symptoms became unbearable. [more..]
  • IC Headache - by Ebony - (Thu, Mar 06 2008)
    For the last few years I had been struggling with sharp painful abdomen pains and everytime I would go see my OB-GYN, he would run test and evrything always came back negative. So finally last year after he found a cyst on my ovary he did a laprascopy and notice adhesions. [more..]
  • HELP - by NANCY - (Wed, Mar 05 2008)
    I HAVE HAD IC FOR ABOUT 10 YEARS AND IT SEEMS THAT EACH DAY IT IS GETTING WORSE. I HAVE TRIED EVERY MEDICINE OUT THERE AND NOTHING SEEMS TO WORK. [more..]
  • Continuing symptoms Of cystitis - by Jennifer - (Wed, Mar 05 2008)
    I was diagnosed wtih intersitial cystitis when I was about 17, right after my son was born. I am now 36 y.o. I have had extreme, though less bouts of pain and each time all urinalysis show lack of infection, though blood in urine occurs occasionally. [more..]
  • IC and all ages - by Brooke - (Wed, Mar 05 2008)
    As i was reading these stories of other people having IC I realized many of you all are older with kids and all. I decided to write my story and show younger people they are not alone either. I am a 17 year old girl that has IC and it really affects me. [more..]

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