Latest Blog Article: ICN E-Newsletter - October 24, 2014 - New IC Treatment Guidelines Released, Clinical Trial, Research & Clinic News
Results 1 to 5 of 5
  1. #1
    ICN Member
    Join Date
    Sep 2010
    Posts
    1

    terrified cystoscopy will permanently damage bladder

    Hello,

    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.

    erin

  2. #2
    Forum Manager ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    36,568
    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.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    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
    .....My Meggie.....

  3. #3
    ICN Member
    Join Date
    Jun 2010
    Posts
    511
    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. #4
    ICN Member cmclien's Avatar
    Join Date
    Jun 2009
    Location
    Chicago
    Posts
    712
    Hi,
    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.
    Cindi


    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: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

  5. #5
    ICN Member
    Join Date
    Oct 2008
    Posts
    1

    Cystoscopy

    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.
    ___________________________
    Sue

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

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •