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Newly diagnosed (by process of elimination)?

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  • Newly diagnosed (by process of elimination)?

    I was diagnosed with IC about two weeks ago. I have had UTI's before so I watch for any signs that one might be coming on. Last summer I had three or four fairly close together. My PCP had a culture done on the last two visits and they both came back negative. She referred me to a urologist. At the first appt. he did a UA, an exam, and sent me for an ultasound. At the next URO appt. I had another UA and was initially scheduled for some type of procedure. I am not sure of exactly what procedure he was going to do because he decided against it, due to everything, including the ultrasound, looking normal. He said to come back if I had any further problems. Then about two weeks ago I had the symptoms of what I thought was another UTI coming on. No pain, but frequency and the feeling of "having to go after just having gone". I went back to my PCP and we discussed the URO results (he put in the report that he suspected some type of UTI infection) the previous UTI's, that I guess weren't actually UTI's and she gave me a diagnosis of IC. When I asked what exactly IC was she told me it was bladdder inflamation with pain and that there was no cure. I told her that I didn't have any pain, just frequency and some pressure occasionally and she then told me that I was "one of the lucky ones". She gave me some papers (topic last updated 2007) and told me to make another appt. in a month. When I got home and read the papers I found the sentence "All patients with PBC/IC have baldder pain that is relieved at least partially by urinating". I was now totally confused because I had told her that I wasn't having any pain. That's when I started looking for more answers and found this forum.

    I am confused as to my next step. Go for my next PCP appt., or go back to the URO? Is there a test for a positive diagnosis?

    I have a special needs grandson (cCMV) that I am very involved with. I seem to have all of the answers for my daughter when it comes to my grandson's numerous medical needs, yet can't figure out my own.

    Any help would be greatly appreciated.

  • #2
    Hi Angi,
    Welcome to the forum!
    There are varying degrees of IC. Extreme pain, moderate pain, mild pain (pressure). I for instance have mild IC meaning I don't have PAIN but I do have discomfort when my bladder fills up and is in fact relieved by going to the bathroom. Some ICers have frequency/urgency and some don't.

    There isn't one test per se for diagnosing IC. I have a link below that covers newly published by the AUA diagnosis and treatment of IC. Read through it when you have time, it might help clear things up. They can diagnose you based on symptoms alone but alot of Uros have their own way of doing things and some tests they like to perform. For instance my UG did an in office cystoscopy to rule out bladder cancer etc, had me keep a voiding record for 24 hours, gave me a lengthy questionaire and then once all of that was complete talked about treatment. You unfortunately won't get one answer from all uros and sometimes you have to go to more then one to have a successful diagnosis.

    Not very helpful I know but true. It wasn't clear to me who thought you had IC, was it your PCP? Were you given any treatment? There are treatment plans in the documents below also.

    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


    • #3
      The symptoms you describe do sound very much like they could be IC. If you are feeling conflicted on the diagnosis then you might want to get a second opinion. Cindi is right, you don't have to have severe pain to have IC. We are all very different in our symptoms and what treatments work for us.

      The first thing I would recommend you do is start the IC diet, it will help ease any inflamation you may have in your bladder that can cause urgency. This link will take you to a copy of the diet Also, another great place to go and get some good information about what IC is and is not is at the top left of this page, click on the tab that says Patients. You will find a lot of info there that should help you in understanding IC.

      I hope you find answers to your questions and relief soon.
      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #4
        Hi Cindi,
        Thanks for the welcome and the reply. I'll read the links you suggested to get more information. My PCP was the one who diagnosed me. No treatment plan. She just told me to make another appt. in a month. The URO I went to told me that everything looked good. Time to get a second opinion.
        Thanks again..Angi


        • #5
          I will check out the patient information like you suggested. I did take a quick look at the diet and have quit drinking soda(2-3 Diet Cokes a day). I don't really have any food or drinks that I can say are a definite problem, but stopping the soda is a positive change either way.