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Symptoms with no diagnosis

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  • Symptoms with no diagnosis

    I posted about a month back about all of my symptoms; frequency, tense pelvic muscles, etc. Since that time, I have been to the urologist, had a CT scan and a cystoscopy. All showed my organs to be in perfect working condition. No evidence of anything. Which is quite frustrating, because there are days that I feel like I have to pee all of the time, and other days where I feel nothing, and only go pee about 4 or 5 times a day. I usually don't wake up at night to pee, unless my husband wakes me up. I do extensive pelvic stretches daily, and I am on VesiCare for OAB. I notice that I have discomfort during ovulation, and the urge to urinate is greater at that time. Sometimes I feel like I am losing my mind, and I long for the days when I did not deal with this. I have a very, very stressful job, and I find it hard to let go of the stress at the end of the day. I don't have any pain per se, but my lower back sometimes aches. It sounds strange, but all of these symptoms started at the time I went off of the birth control pill. Any words of advice/comfort?

  • #2
    An interstitial cystitis diagnosis is made at least partially on ruling out other possible problems. Neither an office cystoscopy or a CT scan will usually diagnose IC. Is your uro planning additional tests? If not, I suggest a second opinion.

    Sending warm hugs,
    Stay safe

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    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


    • #3
      How long have you been having symptoms? It takes a while to exclude other things as cause of symptoms, so it isn't uncommon for it to take a good while to receive a diagnosis. In my case it was exactly a year from onset of symptoms. It sure felt like a long time but apparently that isn't uncommon...and it may take others even longer to receive a diagnosis.


      • #4
        It can take some time to get a diagnosis. Most of the testing is to rule out other problems. I know it can be disappointing when they tell you that all your tests showed everything was fine. I hated that! It doesn't mean that what you are feeling isn't real and that you shouldn't keep looking for an answer to your symptoms. Hang in there, document your symtpoms and how often you go to the bathroom. In the beginning I didn't have the nocturia either, but I still had IC. Remember that everyone is not the same, you may or may not have IC but you need to find out what is bothering you and hopefully find a satisfactory treatment plan.

        I wish you the best.
        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


        • #5
          I agree with Donna you need to have a hydro/cysto done in the hospital to determine if you have IC, that way you can start on proper treatments.
          In the meantime I urge you to stick with the IC diet you can download the diet on the net. I hope and pray you do not have IC but if it turns out you do you are in the right place for understanding and information.
          <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


          • #6
            I had a follow up with the uro today. He suggests I give the VesiCare a little bit more time to kick in, since I have only been on it a month. I am also scheduled for a Urodynamic test in a week. I have my annual with my OBGYN on 5/11, so hopefully the two doctors can work together and figure out what is wrong with me!

            Thanks for your input! It is greatly appreciated!