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In Denial

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  • In Denial

    I was diagnosed with IC 02/10 with cytoscopy. It was a relief to know that the pain I was having for the last 1 1/2 years was not in my head, as some doctors had insisted, but it was a real tangible illness. Initially, although scared to death, I embraced it, researched it, visited this site often, pursued treatment, conventional and alternative. I have accumulated quite a host of compassionate caregivers, along with my wonderful husband of 21 years. I am very thankful for that.
    I don't know if I expected to will this problem away or what, but I have trouble accepting that this is something that will be with me for a long time.
    Trouble accepting the major life changes I have made and will have to make.
    I am in counseling now and my counselor wanted me to join the IC forum because it would be a good place to get help processing the process. I've been reluctant because in my own crazy head it means I can't continue to deny it, I will have to face the emotions I have buried deep within.

  • #2
    Hi Patti! You are NOT alone in this!

    One thing I realized shortly after being diagnosed was that someone who is diagnosed with a chronic disease goes through the same stages of grief that someone who is diagnosed with a terminal illness goes through: Denial, anger, bargaining, depression, and then acceptance. The important thing about that is we need to go through all of the stages, sometimes recycling through them.

    Take some deep breaths, try to be patient with yourself, and take the time you need to learn as much as possible about the disease and the dozens of treatments available.

    The good news is you WILL get better!!!!!!

    Sending you understanding and lots of hugs...............
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author

    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........

    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter

    *Let's Connect!*


    • #3
      to the IC Network family. I know you will find a lot of information and support here.

      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


      • #4
        Hi, Pattie ~ although I'm sorry we need to be here!

        I absolutely understand the "denial" part after the diagnosis. I had symptoms for over 2-1/2 years and after hearing the relief of a "reason" for my problems, I continually found myself in disbelief just as you. I'd never been diagnosed with anything, let alone a chronic disease. I just knew it was going to go away.

        For the last few months I'd been managing my symptoms very well until a couple days before Christmas and then, Wham!!!!, a full blown flare out of nowhere found me calling my doctor from the bathroom stall in Sam's Club. After getting calmed down by my wonderful PA, taking my Pyridium, getting a urine specimen, starting an antibiotic....of course.....the culture came back "Negative". This was the final act that convinced me to give in to the diagnosis and just ACCEPT it. Now I'm more prepared to handle these unexpected moments and DEAL with them rather than DENY them....a very difficult task indeed but one definitely more productive.

        Blessings that things will come together for you in your own time. In the meantime, you seem to have great direction in learning to accept this different way of life. There are many others who share your fears and disbelief.
        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found can you...keep the hope.

        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
        8/2010 Surg gallbladder
        TREATMENTS (updated 4/15)
        IC Diet since 8/2009 (Able to vary 4/15)
        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret


        • #5
          Welcome Patti

          As always, sorry to see a new member, but your doc was wise enough to send you here, so he must know his stuff.

          I agree, everyone goes through the initial emotions, but on the other hand, everyone is grateful that it is not "all in our heads." You will get through this, there are many very good outcomes and remissions. It takes time and patience, trial and error, for some finding a doc who gets it (sounds like you have that already, half the battle is over). Don't get too distressed over this thing. We all need to stick together and educate our docs and others. The most difficult thing is getting family and friends to understand, but it sounds as tho your hub is on the same page. :woohoo:

          Good luck to you, stay with us and let us know how you are, what works for you, etc. Knowledge is power. Take care. Jill, wife of Bob


          • #6

            I appreciate the encouraging the words. The ice is broken now and I hope to take advantage of the wealth of experience here. I won't be so scared to move forward.