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  • Methenamine

    Its been awhile since I have been on here. I didn't have any flairs or UTI's for a year then bam - itttssss baaacccckkkkk.

    I thought I had a UTI in May test was negative so figured it was a flair. I then woke up one morning and had a horrible pain in my back - Kidney Infection! I was treated and it went away.

    I knew I was having difficulty urinating so I set up to have a urethral dialation since at had been 18 months since my last one. I had it on Friday. I was so closed up my doctor had to start with an infant cathetor to start. Hopefully it will work.

    She also started me on a new medication Methenamine - 1GM tablet per day. There isn't much information on it and she did mention that some people can't take it because of burning. I see it is an ingredient in other meds I have taken but would like to know more. If anyone has info or experience please let me know! Thanks a bunch!
    June, 2011 - In remission for exactly one year to the day - what a difference life is without IC...but I am back

    "Sick and tired of being sick and tired..."

    Diagnosed with IC May 2008. Had UTI's (or what I thought were uti's) since I was 10, and terrible menstrual pain, so glad I was finally diagnosed with something.

    Started with Urethral Dilations when I was 21. Since I didn't have a bladder infection when I felt like I did that was their answer - torcher! Had several over the next 15 years...I am now supposed to have one every 6 months because of scar tissue

    Tofranil (imipramine) 25 mg at night
    Vicodin periodically when my dr. let’s me have it
    Klonopin for restless legs
    Nuvaring - constant birth control
    Albuterol Inhaler

    Heparin Rescue instills - series of 6 1 x per week at drs. office. When needed. Series of 12 2 x per week if really bad.

    Transcutaneous posterior tibial nerve stimulation - WORKED however insurance doesn't cover and it ended up costing me a lot of $
    Elavil - helped with pain and frequency but made me so tired I couldn't function - also made me gain weight.
    Elmiron - Sick to my stomach every day for a month tried 3 different times every which way....I can't take it - oh and my hair started to fall out
    Cystoprotek - gave it a try didn't seem to help
    Elmiron Rescue instills - didn't help
    Sanctura - helped for a bit then had hard time emptying bladder
    Cimetidine - took for 6 months never seemed to make a difference
    Hydro distention - put me into the worst flair ever!

    Use all the time - Hugs from my bulldog

  • #2
    in OTC med

    It is also an ingredient in Cystex available OTC (not prescription)
    I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.