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  • #1

    IC from Florida

    I am new to the message board. Im a Floridian, 34 year old Mom of 3. I was diagnosed this past week with IC. My bladder also isnt emptying. I suffer w sever pain every day of my life. The pain I experience is lower abdominal cramping and lower back cramping. I sometimes even feel like Im in labor or something is about to fall out of me. I had a hysterectomy for the pains Im in, my ob thought it would cure me..geuss what, it didnt! It sent me to tons of drs, and many crying fits to finally get where I am today...a diagnosis. However , I have to admit although I have a diagnosis (thank God) I would rather have a diagnosis with one could be CURED completely of..I am sure you undertsnad. BUT I have read around and see there are ways to COPE.....I mean I have coped with the pain thus far. have too. I have my 3 kids and need to take care fo then, a home, a PT job taking care of kids...and I have a life. It has decreased my way of living in the way that because I am in pain all the time I tend to do less...I see the urologist again in 2 weeks to discuss further options. My next one is some procedure done every week in the office w a catheter. Can I get some feedback on that....is it painful, does it work? I have had this for a VERY long time ...no one has been able to find what was wrong til now. My bladder apparantly is displaced and is red in color whoch he said is normal with IC but not with the NORM patient without IC. I do SOMETIMES latley get spasms in CERTAIN areas..is that apart of this..this is a new thing and only hope its not my bladder moving or doing something....but when this happens (it happened yesterday) I bend over and wanna fall down.

    Thanks for listening! hi
    IC (diagnosed 2003)
    Fibromyalgia (sp?)
    Had Hysterectomy 2002 - Prior to be diagnosed with IC. Was thought to have had Adenomyosis and dr did hyster BUT after recovery th epain returned, hence after many tests diagnosed with IC.
    Suffer daily with pain but through it all my husband and 3 beautiful children, 11 year old son, 8 year old son and 4 year old daughter are all here for me. My 11 and 8 year old sons plan to grow up and become doctors and FIND a cure for IC!(Whether they do or not the fact they say that really makes this MOM proud!)

    I get as much support from my husband as he can possibly be able to give me. Its very hard on all of us, not just me with the pain. They watch me suffer every day and see me cry so often, along with taking so many meds..it all deeply affects them just the same!
    My best medicine is the love I get from my family and my friends Having a disease like this, or like THESE really makes you see who is TRULY your friend and/or your family. Those that are REALLY there for you through thick and thin (and believe me there are many many "thins" especially with my moodswings , with being down so often due to the amount of pain I experience everyday of my life...so Im extremely THANKFUL for those FEW "REAL" FRIENDS and those "SELECT" Family Members that are THERE just when I need them, and for NOT judging me or thinking of me as weak, I KNOW it is EXTREMELY hard on them to see me suffer this way, as well as seeing me taking so many prescription medications!)

    The hugs, the support and the sympathy is the best they all can give to me, and they do! That extra hug really goes a LONG way!!!
    Tags: None
  • #2
    Welcome to the IC Network. You'll find a lot of helpful people, as well as a lot of information, on this site.

    The procedure of putting a medication in the bladder through a catheter is called an instillation --- there are different solutions that can be used and different people react differently.

    Are you following an IC diet? That can be very important to help control your symptoms.

    I do suggest you read the information in the Patient Handbook at http://www.ic-network.com./handbook/

    Sending warm healing thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.     [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment

    • #3
      hi and welcome...

      I do not have personal experience with instillations but, I do want to welcome you to the boards. There is a wealth of information on this site and a bunch of very caring and supportive people who will do everything they can to help you.

      grouphug and kissing
      Sharon

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.



      Link to the ICN Patient Handbook:
      http://www.ic-network.com/handbook/

      Link to the IC Diet:
      http://www.ic-network.com/diet/


      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment

      • #4
        Hi Christine, Welcome to ICN. I'm in Fl too, near Tampa. I did DMSO instills when I was first diagnosed & they helped me with my frequency. It's an anti inflammatory to get the red out. Go look at the treatments on this site & read about what is out there. Hugs,Kathi hi
        One Day At A Time
        Kathi

        Comment

        • #5
          East Coast of Florida??????????

          Hi My name is Danielle and I live on the East Coast of Florida, around the Cocoa Beach area. There is no support groups around here, so I was wondering if there is anyone in this area that would like to talk or whatever. My email is [email protected]. Hope to here from someone soon.
          http://www.ic-network.com/patientstories/danielle.html

          Comment

          • #6
            Hi Dani, Welcome to ICN! I know that we have some east coast Floridians here & I hope some will respond with the name of a support group near you. Big smiles, Kathi
            One Day At A Time
            Kathi

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