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New to IC, but adjusting

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  • New to IC, but adjusting

    Hi everyone,

    I'm so glad to have found this support network! I'm a first-wave baby boomer, who has been diagnosed with IC later in life than most. That's somwhat of a blessing, I guess, because I've been challenged by things I never thought I could deal with. But, by just putting one foot in front of the other and going forward, I did. I have my "down" times, but am determined to learn all I can about this new challenge and hopefully use that knowledge to help myself and others with IC and other pelvic pain disorders.

    I have to wait until November 4, before I go to Philadelphia to be evaluated and treated by Dr. Whitmore.

    I was trying to find a urologist, who really understands IC, but haven't come across him or her as yet.

    I do have a wonderful "specialty" gynecologist, who has contacted Dr. Whitmore. Since I have had many surgeries to break-up abdominal adhesions, Dr. Natalya performed an exploratory - advanced robotic laparoscopy - but didn't find the adhesions that she thought might be interfering with the passage of urine from my kidneys to my bladder. She did tell me that she will continue working with me and takes my emergency calls. Love her!

    Right now, I'm sticking to the flare foods on the IC diet. (Apparently, I tried too hard, basically eliminated potassium from my diet, and found myself in the ER with my heart racing, sweating, and cramps up and down my legs.) Don't do this, IC'ers. I'm fine now. But, I had to stay in the hospital overnight, while the wonderful staff pumped potassium into my body via IV. Ouch.

    I'm also using Prelief (Walgreens); Desert Harvest Aloe Vera Capsules, which I honestly believe are working, and am taking Cymbalta, which I think is also working. When I feel a flare coming: Advil, heating pad, cold packs, pyridium, baking soda in warm water. If all else fails, I take 15mg extended relief morphine. (I'm allergic to most commonly used pain killers). Dr. Natalya does not want me to suffer to the point that I am crying. Bless her.

    Hope this isn't too long.


  • #2

    It's good that you found this website - when I was first diagnosed this was a godsend. Both finding great information and seeing what others have tried and most of all, finding friends with IC has really made the whole process easier.

    I was diagnosed when I was 12, so I guess I got the short end of the stick. Since, I've been diagnosed with a handful of other diseases. This leads me to the conclusion that IC is only a branch of a large tree; in other words, there is something more fundamentally wrong, maybe on a genetic level, that's causing all of my problems.

    Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

    Medical research addict.

    Likes: hot baths and naps with cats


    • #3
      I'm sorry to read that you've had this challenge for so many years. Well, I don't know your age, but I'm guessing from your post, that you have been dealing with IC for quite a while.

      Oh, yes, about the importance of this Network! I was just reading, for awhile, and not posting. I have read many posts that have helped me and now I'm hoping that after reading so much about IC, that I might be able to help someone else.

      Take care of yourself!