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Living with Interstitial Cystitis

This section is a place to share stories about Living with Interstitial Cystitis

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Not the fairytale begining…
by: Elizabeth on Wed, Mar 12 2008
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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. I did not know what was going on because my body was not reacting to the normal medications I was taking (detrol). I am now in month two of my first flare of IC I had a cystoscopy/hydrodistention and the symptoms got worse, which one doctor told me was normal. I have missed 14 days of work and can not have intercourse even though I am a newly wed. I have tried to follow the exclusion diet but it seems anything that I eat causes a flare. It has been 50 days of Hell and I have done everything from thinking “I must have done something really terrrible” to thinking “No fair God would put someone through this”. I am not the only one. I am 31 years old and feel like I am ninety. I have been on 13 medications and still feel pain. The nurses have treated me like I am just trying to get pain medication but the truth is that I do not want to take pain medication, I just want to have one day without pain. If anyone has any tips, I would sure be grateful.
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  1. Thu, Mar 13 2008
    I am very sorry to hear what you are going through. I too have been diagnosed with CI at the age of 40 but feel I have had it for years. I am struggli...Read

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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