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Living with Interstitial Cystitis

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I have IC
by: JK on Tue, Sep 29 2009
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I was diagnosed 14 yrs ago with IC I had a total hysterectomy at 30 because Drs. thought that my pain was related to the “female” organs. When the pain did not subside after the hysterectomy I was devastated. I was fortunate to find a wonderful Urologist who diagnosed me and we have been working closely for the last 14 yrs to eleviate my symptoms. I have very bad bladder spasms that hit without notice. I urinate so much my bathroom floor is my bedroom some nights. I do work fulltime as a Nurse. I do call in sick from time to time because the pain is unbearable. I also go to a Pain Clinic which does help. I try to keep a positive attitude but thats not always easy. Not wanting to travel because you don’t know where the bathrooms are. Wondering if you are out will you suddenly double over in pain?

The key is finding a Urologist you truly trust and not settling. I have bladder distentions with DMSO, Elmiron, Heparin, Marcaine done every 3-4 months. I have a lot of pain after this procedure so I stay inpatient for pain control overnight but then I have very little pain for maybe 2-3 months. Might not seem like alot of down time from the pain but 4-12 weeks is a God send! I have a very supportive partner, he understands and supports me. I wish you all much luck!!
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September 2009

  • I have IC - by JK - (Tue, Sep 29 2009)
    I was diagnosed 14 yrs ago with IC I had a total hysterectomy at 30 because Drs. thought that my pain was related to the “female” organs. [more..]
  • Success! - by gaylan - (Tue, Sep 08 2009)
    I am a 65 year old female and have been referred to a doctor in Long Beach, Ca. for what was suspected to be an IC condition by a nutritionist friend named Juli. Juli had been a patient of a doctor at Cedar Sinai Hospital in LA and was treated for IC with a “bladder infusion” of a number of medications. The first 3 visits to my doctor consisted of testing for IC which was confirmed and a 4th visit for consultation which my husband also attended. I was given the option of receiving 6 weekly “bladder infusions” using a small #3 catheter and small amount of Heprin in distilled water. I noticed relief within 30 minutes and after 6 treatments, my life has changed significantly. I am now pain free and able to revive the romance in our marriage. I also eat spicy foods and drink coffee without any discomfort. I’ll be going back for 2 additional infusions. What a miracle and to have come by the treatment in such a serendipitous way! What I have appreciated about my doctor and his staff most is the professionalism, fierce patient advocacy and genuine concern. The doctors are trainers and authors, the leaders in the medical industry. [more..]
  • Interstitial Cystitis - by Michelle - (Wed, Sep 02 2009)
    Hi my name is Michelle I was involved in a car accident and three months later I became paralyzed from the waist down I was told I had Tranverse mylietis and after I started to recover I notice I had a problem with my bladder. [more..]

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