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Keep the faith -- it can get better!!

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  • Keep the faith -- it can get better!!

    I unfortunately was diagnosed with moderate IC in September of 2010, after having 3 months of unbearable pain, two episodes of urinary retention and many arguments with my urologist that I did not in fact have a sexually transmitted disease, as my urologist insisted. I am sure you all know what it is like . . . being juggled from urologist to gynecologist, logging major hours in the ER, being diagnosed with kidney stones, UTI, ovarian cyst, etc, spending your summer in bed, missing out on life. At any rate, I insisted that my urologist do a cysto/hydro on me, and I was found to have significant glomerulations on my bladder and a reduced bladder capacity -- ta da -- IC. I promptly cut out all soda, coffee, ketchup, etc. and I no longer flared, but I still was left with constant pain -- feeling like menstrual cramps, 24/7 with no relief.

    I promptly took all of my records and made the 2 1/2 hour drive to a specialist listed on this site, who is a wonderful, inspirational man who is really trying to cure all of us. He put me on Elavil, which made me drowsy, and in the meantime I also began researching and reading. I completed pelvic floor therapy, which helped my hip pain but did nothing for the menstrual cramps.

    To make a long story short, I began trying Tagamet 200 mg three times a day, on a hunch, and really with the feeling that I had nothing to lose. After three days of this treatment, my symptoms were gone. GONE. Unfortunately I'm not in remission, as if I don't take my Tagamet every day, 3x a day I get the cramps again, and it has to be the brand name, not the generic, as the generic leaves a salty taste in my mouth. I spoke with my urologist about this treatment and he gives me his blessing to continue. He seems to think the acid load in my stomach is high and has thinned my bladder wall, causing urine to aggravate it. I am now trying to modify my diet further to perhaps see if I can come down on the Tagamet. Currently, Tagamet is all I need to feel COMPLETELY NORMAL. I do not know if this will continue -- I pray it will, but I felt compelled to let other people know about this treatment. I don't of course believe this will help everyone -- I do believe that IC has different causes. But if it will help one mom get back to being a normal mother again, instead of being bed ridden, then I want to do that!

    At any rate, I also want to thank the IC network for giving me all the information I needed to demand a hydrodistention that my first urologist would never have done otherwise, enabling me to have my diagnosis in 3 months instead of 3 years.

  • #2
    And please do not take this as an endorsement for Tagamet. While it is generally well-tolerated, it can cause interactions with other medications. I happen not to be taking anything else currently. It works for me and hopefully it can help someone else.


    • #3
      keep the faith

      How great that you found something that is working well for you.

      Thanks for taking the time to tell us about it.


      • #4
        Happy for you that you found something that is working. We try so many different meds for this condition that when we find something so simple that works with no side effects it truly is a blessing.