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My story- MD with IC

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  • My story- MD with IC

    I first developed IC after a bladder infection in 1973. I went to a urologist who said my urine was normal. The symptoms lasted a few weeks and went away for a few years. In 1977, I again had a 3 to 4 week flair of IC. Fast forward to 2001, I had urinary pain and urgency for about 7 or 8 months. I took a vacation to France and had no symptoms. I came back and the symptoms returned. I figured out that I had not had any diet coke while in France. I quit the diet coke and was fine.In 2010 again had a bad flair. At that point, I dropped, coffee and wine and again did well.This May I had terrible symptoms and did poorly until August. Starting in May, I researched and did everything possible to stop the symptoms including 1. Strict IC diet 2.Installations with Heparin/lidocaine (AWFUL)3. Elmiron 100mg tid 4. Cystoprotek 2 per day 5. Ranitidine 300mg every night ( to prevent mast cell degranulation) 6. Took a 2 week course of doxycycline ( research showed a beneficial effect even if no urinary infection)7. Amitryptilline 10 to 30 mg daily 8. Vicodin up to 3 per day for pain 9.Read "Ending Female Pain" and "Heal Pelvic Pain" and I do the stretches daily. I am doing very well again. I am not sure which of the things helped or if it was a combination. I know that the Elmiron worked for me. I am so grateful that I am better! I am more sympathetic than ever for my patients with chronic pain!!!!

  • #2
    Thanks for sharing, I'm glad you now understand your patient's that are in pain.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

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    • #3
      That's great, Barb! Thanks for sharing. I hope you continue to get better and better.
      March 2011-Symptoms began
      May 2011-Tentative diagnosis by OB/GYN
      October 2011-Confirmed diagnosis -- IC/PFD

      Current treatments:
      Elmiron- 300 mg (Began 12/11)
      Hydroxyzine- 50-75 mg (Began 7/11)
      Tizabidine- 2mg 3xTID, if needed (Began 12/11)
      IC Diet-Began 5/11
      Pelvic Floor Therapy-Began 12/11

      Current Supplements:
      Cystoprotek
      Magnesium
      Fish Oil
      Biotin

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      • #4
        Hope you continue to do well! I also have much more respect and empathy for people with chronic pain... if I had not suffered myself, I would have never understood what it was like. I suffered for quite awhile until I found what works too... Now I live normally again, with a sometimes "pesky" bladder haha.

        Definatley an interesting time in my life that was. I hope it never repeats itself!

        Jenn
        28 yrs old,

        I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

        What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

        Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



        Me in my graduation gown!

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