Announcement

Collapse
No announcement yet.

Newly Diagnosed

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Newly Diagnosed

    Hello

    I have recently been diagnosed with IC. Along with a case of VV. I have had these symptoms since I was very little. I went from doctor to doctor only to be treated as if I had a UTI and then be told I didn't have one. My new urologist that diagnosed me is AMAZING! Apparently I have a severe case of it and in his words my bladder is "all messed up inside". It feels nice to finally know what I have but then again it kinda hurts to know that there is nothing that I can do about it. I am a college student so the constant urination takes a toll on me and my classes and when the flares ups are at their worst (like right now) it takes everything that I have to push myself to continue my classes. It is a lot to handle especially with this diet that I am trying so hard to follow. Thank goodness that I have a great boyfriend of 6 years though. Often times I cry because do to the problem that it causes with sex I feel as if I am not good enough. I know that it isn't my fault and I shouldn't blame myself but I feel as if I hold him back. He always reassures me that he is always going to be with me no matter what, but I can't help to feel like not only is my IC holding me back but maybe it is holding him back too. He can't even live I guess what would be considered a "normal" life for a 22 year old boy. I try to stay tough but especially when I flare up it gets harder and harder. I know I can get through this.

    p.s - I read a tip about the Milkshake from Burger King to help with the flare, I tried it, and it was AMAZING, it actually helped!
    Medicines Taking
    • Elmiron 3x a day
    • Amitriptyline 1x a day
    • Pyridium as needed


    “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer


  • #2
    Hi Jessezgrl,

    Glad you were finally able to find a doctor to help you. Have you started any medications? There is tons of information here about the various treatment options for IC. You can also go to youtube and look up ICNJILL, there are lots of helpful videos there. This one - Dr. C. Lowell Parsons - Part I - San Diego IC Conference (Interstitial Cystitis Network - has some very good information about treatments. Just so you know, there are three videos in this series.

    The diet can be tough. But so worth it. If you keep a food journal and a voiding log, it will help you identify possible trigger foods.

    I really admire your strength. Having severe IC symptoms and keeping up with college classes can't be easy. Luckily, you've finally gotten a diagnosis and can now work on feeling better. Hang in there

    Pam

    Comment


    • #3
      Hello!
      Thanks! I am on Elmirol 3x a day and I am also on Amitriptyline once a night for now. My doctor wants to see how that is gonna work out for me. Thank you so much for the videos! I am for sure going to check them out. Thank you for your kind words. It is honestly people like you that keep me going. Thank you for your support and help!
      Medicines Taking
      • Elmiron 3x a day
      • Amitriptyline 1x a day
      • Pyridium as needed


      “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer

      Comment


      • #4
        Not to hijack but... milkshakes can really help??? I've been afraid to consume anything from a restaurant out of fear of flares. I'm ok with dairy but I think sugar makes me spasm..
        • 27 year old student
        • Had symptoms since I was 5
        • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
        • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
        • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
        • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


        Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

        What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

        What didn't work: Elavil, vistaril (12/22)

        Comment


        • #5
          Elmiron

          Just wondering if anyone has gotten nose bleeds from Elmiron. I have an RX but am terrified of nosebleeds and this is a blood thinner. Any comments would be appreciated. thanks

          Comment


          • #6
            I have been on Elmiron for about a week now and I haven't noticed anything out of the normal for me. But then again I don't know anything about what it does long-term. As for the milkshakes yes! I don't know about other ones but the Burger King ones really help me. I thought that was weird too when I first read it but I tried it out any way. It hasn't been long term relief for me but when I drink one it usually gets me through the rest of the evening and until morning without any pain =)
            Medicines Taking
            • Elmiron 3x a day
            • Amitriptyline 1x a day
            • Pyridium as needed


            “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer

            Comment


            • #7
              Elmiron

              Hi,
              Thanks for your reply. did your doctor give you any information as to the side effects of Elmiron? Also how much elavil do you take and do you get any heart palpitations from it? I am so sensitive to all these meds it makes me crazy. Thanks for your support.

              Comment


              • #8
                The information my doctor gave me on the side effects of Elmiron that he really wanted to stress was the hair loss ( which is very uncommon) and the fact that it thins your blood out a little so if you were to go get any surgeries or things of that nature to be aware of
                Medicines Taking
                • Elmiron 3x a day
                • Amitriptyline 1x a day
                • Pyridium as needed


                “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer

                Comment

                Working...
                X