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Newly diagnosed and trying to understand!

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  • Newly diagnosed and trying to understand!

    I was diagnosed 3 weeks ago with IC after doing a cystoscopy. I was very grateful to finally be diagnosed with something. It all started in November 2010 when I had pain in my lower left side and my urologist thought it was Kidney Stones. I had a Lithotripsy done at the end of December and nothing. After going to my post-op, still in pain, my urologist told he was going to refer me back to the family doctor because he couldn't do anything else. I was completely frustrated because I know it's something. I decided to leave that Urologist and switched to another that I was referred to. Wow...what a difference! I constantly had blood in my urine over the past few months with no bacteria. My new urologist also suspected a kidney stone at first and I got prescribed percocet for the pain. I went back the next week with no change so he recommended I have a cystocopy done. 3 weeks ago I did have the cystocopy done. Obviously uncomfortable for the first few days but then felt fine. That is up until 3 days ago when I started getting the urgency feeling to urinate constantly. I would toss and turn half the night in bed and it was sooo frustrating. Yesterday I started taking AZO which did seem to help a little and today I had my follow-up appt with my urologist. He said I have a tiny bit of bacteria so he's going to say I have a UTI and gave me antibiotics. I still have pain in my side (front and back left side) and in my back but he says that's part of the UTI. If I'm still not going good after the 7 days, he wants me to come back otherwise I don't have to until I start feeling pain and/or urgency again. Also, his next suggestion is amitriptyline.

    I am sooo sick of being in pain. I'm 32 years old and had my tubes tied in 2008. Before that my periods were short and relatively painless. Not I get horrible cramps and it lasts longer. And now this. I'm really glad I found this website. Going thru it alone as helped tremendously!

    Thank you all for listening!


  • #2
    Welcome Robyn,sorry to see you here.

    So have they formally diagnosed you with IC or just suspecting it? It could be a multitude of issues. Would totally recommend that you look at the IC diet and try to stick with it for at least a month and see if that helps your symptoms. It's a good thing for a lot of bladder problems anyway. Try to stay more with alkaline foods and stay away from acidic. I would bet you will feel at least a little better. Keep reading, stay informed, and always have a good relationship with whatever doctor you choose. So very important.

    Wish you luck, and look forward to hearing how you make out. People here care about each other, and all always want to hear about any new treatments/meds that may help. One never knows who may discover the breakthrough. And above all, do not get discouraged, there is relief, it just sometimes is a journey that almost everyone has had to travel. Hang in there. Jill, wife of Bob


    • #3
      Hi Robyn,

      Hope everything goes away with the antibiotic! If not, his suggestion of amitriptyline is a good one and lots of people with IC take it (super low dose) every night and it helps with pain and frequency and also helps with sleep.

      Also, have you tried birth control to manage your period symptoms? Bad period symptoms can bring on IC flares too. I know your tubes are tied and it might seem counter intuitive but sometimes people just take it to manage the monthly symptoms. Just a thought to mention with one of your doctors. It seems to help with IC symptoms too.

      Hope you feel better soon.

      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link:
      AUA 2011 Guidelines to diagnosing and treating IC overview-
      AUA 2011 Guidelines to diagnosing and treating IC PDF:
      Great treatment flowchart on page 19 of the pdf


      • #4
        to the IC Network. I'm glad you've found a urologist who will work with you to help you feel better.

        I suggest you give the IC diet a try --- you'll find the link to the latest food list in my signature below.

        Sending healing thoughts your way,
        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


        • #5
          Thank you for the responses! My urologist did say that I have IC and that if this is just an infection right now, I may not see flare ups for years but who knows. I actually was able to fall asleep last night with no urgency pain so I'm grateful for that. Unfortunately the last couple nights I've been scared to even go to bed for fear of having to deal with that pain so I've been staying up really late.

          I now have an excellent Urologist and am so happy I found him. He really seems to care and listen which I love. We'll see how it goes once the antibiotics are done.

          I will definately check out the IC diet page. My fear is that I'm a very picky eater. LOL Also, my drink of choice is Coke and it's VERY hard to live without. I know that can't help. I've definately thought of getting on birth control to help with my periods which I will be talking to gyno at my next visit.

          Thank you all and I'm so glad to see that I'm not alone in all this!!!