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  • new girl block

    Hello there my name is Kiersten,

    First of all let me say THANK GOD I found a network of people who understand what IC is and I can relate to and vice versa. I am 39 and was diagnosed end of June and it's been rough few months. I have had urinary problems all my life. With frequency, prone to UTI's etc. Around March I assumed I had an aggressive uti that wouldn't go away kept doing rounds of antibiotics to no avail. I went to a new doc, who said that I did not have one however she felt I needed to see urologist. Long story short went had those awful tests done and find out I have this horrid disease. I usually have strong threshold for pain. I have endometriosis(sp?) so my periods are awful as well as I said before countless uti's. However this is by far more dibilitating than I could have imagined. At first I was strong and took it pretty good I was like okay not cancer or something life ending I can deal and move on. Well last week I had the worst flare yet. Started on a Sat afternoon and by Tues night I was in ER after trying everything. Well come to find out that not only was I flaring but had the start of a UTI which never dawned on me because since being diagnosed just assumed it was all IC. For first time since this all started and first time in my life a depression came over me that actually scared me. I think the reality of what we all have and how hard it is and that it is forever no cure hit me. I think when diagnosed I was like okay good know what it is they gave me meds so as long as I am 90-95% better I can deal. Well as we all know it is not that cut and dry. My darling supportive husband has been on computer since flare occured and not only found this great site, but gave me good home help aids ie:baking soda and water....

    I know I wrote a book lol sorry, I am a. wanting to fill you all in on my history and road to this point and b. I am sooooo grateful to have found a group of people that not only know what IC is but can relate to me and I to them!!

    For meds I am currently taking Prosed ds, as well as just started after er trip ditropan. They did give me amitriptline which I hattttedd how it left me feeling next day so I will only use that if I am in a flare that is a doozy.
    I do have ADHD and was recently changed to Adderall last wk which is what I think sent me into the flare, not knowing that it was a big no no for IC people.
    Well thanks to this site I found out about Dexedrine that not only could people with IC take this with usually no bladder irratation but that studies are showing it to help us with symptoms. So this is day two on it and though no irratation I think it is to soon to tell IC wise if this is working.

    So my hopefully new friends I hope I wasn't to long winded know I had alot of sp errors , but I was excited and wanted to get it all out, lol

    I look foward to sharing learning and getting to know people here

    Kiersten

  • #2
    Welcome, I hate you had to join us but as you say "we now have others that understand us". I was diagnosed in March of this year have had all kinds of treatment, I've finally had 5 days without pain and I'm hoping all the meds have kicked in.

    You will find alot of support on this site and trust me your life will get better.
    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

    Comment


    • #3
      Hi Green eyes nice to meet you!! Yeah it has been rough. It is so weird how many people who have this have IBS. I have always had stomach problems but since this has started it is off the charts. Everyday I am so bloated I look 5mth pregnant and such bad gas pain hurts to touch upper stomach area. What do you take/do for your IBS??

      Comment


      • #4
        I'd just like to add a to the IC Network and hope you are having a better day today.


        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


        • #5
          Hi, it's great to meet you.. sounds like you have been the down the road with many symptoms/ic stuff etc. It sounds familiar to me I have had symptoms for 4 or so months, maybe longer though. I am waiting to get in with uro.
          I look forward to getting to know you and I hope you are feeling better a little better today!
          -Pammylynn Rose
          Wishing everyone a pain free bladder day!


          Painful symptoms start in May 2011
          Diagnosed with IC in Aug 2011

          MEDICATIONS
          Elmiron
          Axert (only for rare migraines)
          Strict IC diet
          Gluten/dairy/egg free diet


          Comment


          • #6
            Hi great to meet you as well!! Do you have your appt already set?? Hope your doing okay while waiting. It is not a walk in the park that is for sure. If I can offer you any advice (even though I myself am still in the learning phase) please ask. This has been a very tough road. I hope you have a good support system around you!!

            Comment


            • #7
              ICNDonna

              Thank you so much for your welcome!! Today was one of my better ones so to speak, thank you . I am so thankful to have found this network, it is comforting to know I have quite a few shoulders to lean on

              Comment


              • #8
                Originally posted by kierd View Post
                Hi great to meet you as well!! Do you have your appt already set?? Hope your doing okay while waiting. It is not a walk in the park that is for sure. If I can offer you any advice (even though I myself am still in the learning phase) please ask. This has been a very tough road. I hope you have a good support system around you!!
                I have my appt the 18th of August, that was their first appt. I look forward to finally finding out what this is.. even if it isn't IC. The diet has been working amazingly for me the past two days! I feel very lucky...
                -Pammylynn Rose
                Wishing everyone a pain free bladder day!


                Painful symptoms start in May 2011
                Diagnosed with IC in Aug 2011

                MEDICATIONS
                Elmiron
                Axert (only for rare migraines)
                Strict IC diet
                Gluten/dairy/egg free diet


                Comment


                • #9
                  oh and I saw you do the baking soda and water.. that works well for me too! I am so glad that I found this place. It is a life saver
                  -Pammylynn Rose
                  Wishing everyone a pain free bladder day!


                  Painful symptoms start in May 2011
                  Diagnosed with IC in Aug 2011

                  MEDICATIONS
                  Elmiron
                  Axert (only for rare migraines)
                  Strict IC diet
                  Gluten/dairy/egg free diet


                  Comment


                  • #10
                    Originally posted by kierd View Post
                    Hi Green eyes nice to meet you!! Yeah it has been rough. It is so weird how many people who have this have IBS. I have always had stomach problems but since this has started it is off the charts. Everyday I am so bloated I look 5mth pregnant and such bad gas pain hurts to touch upper stomach area. What do you take/do for your IBS??

                    Good Morning, I don't have IBS but I do have GERD I take zegirid(sp) for that. Hope you're feeling some relief.
                    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

                    Comment

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