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terrified cystoscopy will permanently damage bladder

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  • terrified cystoscopy will permanently damage bladder


    I am looking for some reassurance, I guess. I am scheduled for a cystoscopy this Friday and am terrified. I keep thinking that the cystoscopy is going to exacerbate my current flare-up, or further harm my mucosal lining, or cause permanent damage, and I'm going to become bedridden for an extended period of time or permanently.

    How long does it normally take for people's normal pain level to be restored after cystoscopy?

    Has anyone had permanent exacerbation of their IC or damage to the bladder following a cystoscopy? I told my doctor that I do not want a distention.

    I wonder if anyone knows whether a pediatric cytoscope might be more comfortable? My urethra is very small apparently so when I get a catheter, my nurse uses a child's one. The urologist said he would use a pediatric cytoscope on me, but I don't know whether this would potentially be helpful or not. Maybe he was just trying to placate me, knowing that once I'm prone on a table, it's not up to me anymore anyways?

    Part of my panic is self-blame. If I were in a car accident and was unconscious, and doctors at an emergency room did a procedure that didn't go well, I would be sad, but I wouldn't blame myself because I had no role in consenting to what they did.

    But with the cystoscopy, if it doesn't go well, and I wind up with permanent damage and it just worsens my IC, then I will blame myself. I don't know if I could take it. I guess I'm not convinced that cystoscopies are 'safe' and I do suspect they're overused by urologists for IC. I keep telling myself that the risk of damaging the mucosal lining is worth finding a potential tumour earlier rather than later, but it's not really calming me down. It doesn't help that that I've had some previous traumatizing experiences after trusting doctors, one with a male doctor which was violating.

    Anyways, sorry this note so long, but I feel pretty isolated and it's hard to find people I can speak to about this and feel believed. I am so freaked out that I have even considered asking the urologist if I could insert the cytoscope myself, or get a nurse to do it (nurses are usually gentler, I feel). I know that is not possible, but still I think about it.

    Maybe I will reschedule the procedure until I can calm down or find some peace with consenting to it.


  • #2
    I have never heard of a cystoscopy without any other procedure doing any harm to the bladder --- the doctor will simply look at your bladder lining. If you can manage to relax by deep breathing or any other method you prefer, it will make it much easier for you.

    If you don't feel you can possibly relax, I suggest you ask the doctor to prescribe something to calm you down before the procedure.

    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.

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    • #3
      My hub had one done in office and while it was painful, it only takes a minute. If your uro is suspecting a tumor, there are other noninvasive ways of doing that. Don't get worked up about it, and will say Bob had no problems afterwards that weren't there before. I would say get it over with and don't fret. Maybe he will prescribe a tranquilizer so you'll be relaxed before you even get there. In any case, make sure you have someone go with you and maybe even hold your hand during the procedure. It's not that bad and is real quick. Let us know how you make out. Jill, wife of Bob


      • #4
        I had one done a couple weeks ago and it WAS NO BIG DEAL (for me anyways). I was so worried and worked up about it I have put it off for years! no kidding, couldn't stand the thought.

        It basically took 10 minutes, they put the catheter in, filled my bladder with sterile water to the extent I could take it, were talking to me the whole time about my comfort level, drained it to see if there was any blood, filled it again, looked at it with the camera, had me pee it out, I was done! They gave me a macrobid and I had brought an azo to take and was absolutely fine. I drank alot more water that day.

        I'm pretty sure its the distension that causes so much after pain and I have never had one done.

        Also, the potassium test is sometimes used to diagnose IC and can really hurt and burn so find out if they're simply doing sterile water or potassium. If they are going to do the potassium test then look into that really well as that could definitely cause you some pain if not done correctly. There are lots of people on here with could insight into that test.

        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


        • #5

          Before I had a cystoscopy with hydrodistension last April, 2010, I read multiple negative online postings, and I was really scared. I had a very bad first experience with a male urologist who gave me an in-office cystoscopy (no distension) during which he took two "bites" (biopsies), as he called it, while joking with the nurse. He commented that he couldn't see the bladder walls well enough to make a diagnosis. I was given no oral medication of any kind prior to the procedure to alleviate the discomfort, only a local. Too much pain for me during and after, plus a lot of bleeding for a few hours afterward. A year later when another in-office cystoscopy was recommended, I declined. Referring to the professional listings on this website, I made an appointment to see a female urologist. What a different experience!!! The nurse practitioner I saw and have seen at each appointment since was thoroughly familiar with my symptoms, was sympathetic, knowledgeable and helpful. Ultimately, the out-patient cystoscopy with hydrodistention procedure was scheduled, and even though I knew I would be anesthetized (propofal?) during the procedure, I was afraid that afterwards I would suffer worse IC symptoms than before, because of all that I had read online. Nothing could have been farther from the truth. Not only did I have no pain following the procedure, but the next morning when I peed, there was not a trace of IC symptoms. It was like time traveling back to the day when I had a healthy bladder. Perhaps this was attributable to the analgesic bladder wash I was given during the procedure. Due to the elevated mast cell count in my case, I was also given a prescription for the antihistamine Hydroxyzine; I was already taking Elmiron. I have the "lightswitch" version of IC; I am fine one day, and the next day, probably due to diet and/or stress and/or lack of sleep, I am confined to the bathroom with shuddering pain, burning, spasms, and constant need to urinate. Even after taking my flare medication (pyridium and prosed) and getting relief within twenty-four hours, I dare not venture out of my house for two or three days without wearing Depends, because of incontinence, almost complete loss of urination control. Since the outpatient prodcedure, the flares have not entirely disappeared, but thanks to the medication prescribed, I am able to manage my IC satisfactorily. Perhaps the success of my outpatient cystoscopy experience was due to the expertise of the doctor who performed it, the considerate hospital staff who assisted, and for me, the fact that I was sedated. The smartest decision I ever made was not to allow a second in-office cystoscopy with only a local anesthetic. Some people can handle it, and that's fine. I can't. You can find a doctor who will perform a cystoscopy with sedation. Judging by the tone of your post, that's what I would suggest. And check the professional listings on this website.

          Elmiron Caps 100mg
          Hydroxyzine HCL Tabs 25mg
          Pyridium Tabs (200mg) and Prosed DS Tabs (no strength given) as needed for flares


          • #6
            Re: terrified cystoscopy will permanently damage bladder

            Id like to add that this procedure, not the one where you are awake but the one that you are put to sleep caused me severe damage to my bladder, the expanding of the bladder was done while I had no control and I have never been the same since. I now have full blown bladder pain after 2 years. Before I only had frequent urination after sex or alcohol for 2 weeks. Avoid both and I was fine, ate not so great diet but it didnt bother me much. Now I can barely eat, I tried Elmiron and that set me into a flare up after I discontinued it due to stiff neck problems. Between the over expanding the bladder and Elmiron my bladder is horrible. Depending on your symtoms I would recommend anyone to move to a diet that only includes water and no triggers for 2 years. My symtoms had all stopped just before my scope, I only went because I wanted to be sure of no tumors and such. Huge regret. Do the scope while your awake and know whats going on. Never allow anyone to expand ur bladder, this is a temporary fix for 3 months for extreme cases and most times causes more damage than good. I hope this helps anyone in this situation in the future. My original symtoms were caused by antibiotics use. Mostly a sensitivity and constant non bacterial uti after certain foods and sex. It just needed time to heal over a few years.


            • #7
              Re: terrified cystoscopy will permanently damage bladder

              Zombie, to heal a broken bladder lining, find out where you can get Uracyst Instills. This is lifetime treatment, but it is only thing next to Elmiron to coat the bladder lining. While Elmiron has many side effects, Uracyst has none, while it stays in bladder. It can burn first, but after you get used to it, it gets better. I do it once per month last 3 years.