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Urologist, cystoscopy???

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  • Urologist, cystoscopy???


    I've not been on the forum for a long time. For a number of years, I was controlling things fairly well with the diet. But then multiple major life stressors, etc., and eating some baked goods that had problem ingredients set me back into a cycle of flares, ER visits, etc.

    In any case, since I finally had decent insurance, I talked with my MD about getting an actual clear diagnosis . . . I went for a cystoscopy in Seattle. They did no biopsy, and I swear, it was all of 10 seconds. "Your bladder looks fine to us." I was not there for the fun, but after all of this and years of following the diet, taking Quercetin, and marshmallow root, which worked, I thought I'd get some information. Nothing.

    This urologist told me to drink LESS water (as in less than 5 glasses per day!!!) and prescribed Oxybutynin. Incontinence has NEVER been my main problem, and concentrated urine HAS . . . This seems like nutso medicine to me (yes, well respected hospital). I reviewed the Oxybutynin, and I really don't think I need it, nor the potential side effects.

    I said to the MD, "Do you think I should go off the diet????" And she said, NO.

    Thoughts, advice? I'm SO mad and SO frustrated. I've worked so hard to manage this, and just wanted a little skilled assistance. And I'm sure I'll end up with a whopping copayment.
    Diagnosed 6/4/07, also IBS, migraines, allergies,
    hysterectomy, previous fibroids, cysts.

    Help measures in process -- hope to start PT, etc. Main pain meds: HEAT, Tylenol, Alleve, Working on diet!

    Cold infusion of Marshmallow Root tea 2x day, Citrus free Quercetin 2x day

    I am not my illness -- it's just a facet, I aim to enjoy life and pursue my dreams! I hope it makes me a more compassionate human being.

  • #2
    It's not unusual for an IC bladder to appear to be healthy and normal during an office cysto with no anesthesia. Many uros will try to relieve symptoms with medications before considering IC. If the ordered treatments don't work, my suggestion is to call her office and let them know it isn't doing the job and ask for more testing.

    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
      Oh, I can definitely understand your frustration - it took me my entire childhood to get a diagnosis.

      I find it odd that your procedure only took 10 minutes, because usually the diagnostic method involves a hydro-distention during the cystoscopy (this is when the doctor fills your bladder with a saline solution to 1) see the capacity it can hold and 2) see if it hemmorages, because I.C. bladders usually only hemmorage when filled completely with this solution).

      If you only had an in-office cystoscopy done, I would seek a hydro-distention to see if that can get you a diagnosis (this is done under general anesthesia, and is how I was diagnosed).

      As far as the medication, if you feel uncomfortable taking it or are worried about side effects, talk to the doctor or get a second opinion from another - only you know what is right for your case.
      Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

      Medical research addict.

      Likes: hot baths and naps with cats