No announcement yet.

Newly Diagnosed...

  • Filter
  • Time
  • Show
Clear All
new posts

  • Newly Diagnosed...

    Hey ya'll, I was just diagnosed last week with IC. I am 23 years old, and have had symptoms for about two years. I think in my gut throughout these years I knew it was IC...but now it's really...real! I find it hard to even grasp this notion.

    I find this all to be very overwhelming and it makes me feel ostracized and lonely. Currently I am going to physical therapy and will start bladder installations this week. I personally have the HARDEST time even being okay with being so exposed every week. To me it's a really humiliating upsetting process. I even have a really nice, smart, female doctor, but it does not ease that anxiety what so ever.

    The hardest part I am finding is dealing with the constant pain. I know that right now it's a very bad flare up, so perhaps it won't last forever (although it's hard to see the light at the end of the tunnel!) but it just won't seem to let up! Being in pain all the time makes me so moody, and negative. It's so hard to be positive when you just don't feel good! Painkillers might take the pain away....but they make me even more down about things. It's a catch 22.

    I just starting dating someone that I really thats a whole new set of issues. I am thankful he is so kind and understanding, but I am constantly worried that one'll just be too much.

    I bought a lot of books about IC and books on the IC diet. It seems like I am sensitive to most foods so it's really difficult to find things safe enough to eat. It's a lot of work, and I'm really hungry!

    Anywho, that's my story. I am looking forward to getting more information about IC and listening to other people's IC stories. I hope that in time it will all get more manageable.

  • #2
    Hello and welcome Im sorry about your diagnosis but thankful that it didnt take too long and now you can begin getting proper treatment for IC. Has your doctor suggested Elmiron? or any of the other medications commonly prescribed for IC? Im hoping that the instillations will give you some relief. The diet does help me alot with my symptoms. There are alot of foods that many of us cant tolerate but there are many that we can enjoy to the fullest! I had a soft serve vanilla cone the other day, it was heavenly!

    Im glad that your fella is trying to be understanding about IC. Im sure he sees that you are so much more then the IC and will be there to support you through treatment Keep learning all you can about IC but dont believe everything you read on the internet. There are many treatments to try, if one doesnt work you can try something else and go back and try things again if need be.

    Ive had IC for 15 years and now have 2 children and a busy life caring for my husband and my boys. Not every day is perfect or painfree but each one is a gift
    Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

    “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus


    • #3
      Hello, I too am newly diagnosed (just a couple on months) I started my treatment with instills once a week for 6 weeks and like you all I could think about was "wow" I hate having my yearly exam and now to do this every week, but I will tell you after the first instill I woke up the next morning and no pain it was well worth my exposure to not have pain. I am now on Elmiron 100 mg twice a day and will have my first hydro next friday. Just remember it may take time to find the right treatment for you but you will find the light at the end of the tunnel.
      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


      • #4
        to the IC Network family. I'm glad you found us.

        I do understand how you are feeling --- believe me that it will get better. It can take a while to find the most effective treatment options for each individual but most of us do and most of us feel good most of the time.

        Warm hugs,
        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        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:


        Diet list:

        AUA Guidelines:

        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.

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