Cystoscopy - brutal and traumatic?

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Hi everyone. I’m new here and I’m new to cancer. I had a cystoscopy confirming a tumour two weeks ago and I have my TURBT booked in 6 days time. I found the cystoscopy to be the most traumatic experience of my life. I’m spending more time thinking about and worrying about cystoscopy’s than the bloody cancer itself. The procedure genuinely traumatised me Disappointed.

is this just me? Did I have a particularly bad experience?

also has anyone successfully demanded it being done under General Anaesthetic? 

Many thanks

  • Been there myself bud, after the second one with just the numbing gel it was agreed I'd have general anaesthetic for future cystoscopies with the rigid rather than flexi and any tumours removed if any recurrences or biopsies. 

    Sadly after being clear at my last one I'm now on 6 monthly flexis again, next one coming up anytime soon. They have asked my GP surgery to support me with some meds to help try and deal with it, so have that appointment coming up soon to see what they can give me to help me relax as the less relaxed you are the more brutal it is. 

    Tbh I even found it difficult having mitomycin into my bladder once q week for 6 weeks and then had to do it again with a different drug called epirubicin when the first didn't work. Not as bad as the flexi camera but still unpleasant. But I still. Forced myself to go and have it done, taking deep breaths helped a little and trying to control my breathing but still I'm useless at stuff like that.

    So believe me you aren't the only one,some guys don't really struggle with it or find it hurts others do. I do have a slightly enlarged prostrate which again pushing past that can cause pain if it is enlarged. 

    But you will find ways to deal with it, and it over pretty quick when all said and done. 

    But the issue with having GA is you can't keep on having them and there is always the risks with a GA as well.

    And I didn't demand it was GA it was the nurse and doctor that did the second one that said you really can't cope with this can you, and I said no I felt hot dizzy and almost like I was going to pass out after they pulled the camera out so that's how it ended up being looked into and going GA for a while. But they won't keep you GA all the time at some point you will have to have normal flex is again. 

    Some say it's gets easier the more you have it done, but the first time I didn't even know I was having it until I got into her room so had no time to worry, but it was still brutal that time for me. 

    ________________

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Hi  and welcome to the group although sorry to hear you had a bad experience with your flexi. They are not the most pleasant things to go through but most people usually cope ok. We do however have members who are adverse to them. I have had many over the years and you do get used to them, especially if you are given the all clear. In extreme case s we have had people go through them under GA but very rare. The cost comes in to play. You should be better with your TURBT as you don't know much about it. Just prepare for an overnight in case you go down late. Best wishes.

    Best wishes to All,   rily.

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  • TURBTS are done under either GA or Epidural anyway so that won't hurt at all while they do it. At least all mine were as the rugid cystoscopy is larger than the flexi one. 

    ________________

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Hello,

    While challenging at times, try to remember it's thanks to these procedures that we can have early detection and find a treatment path to hopefully lead us further away from cancer. 

    Was it physically painful or the process of the procedure that was difficult? Inflamed or enlarged prostrate don't help.  Pannadol before and after might help but check first with the medical team before hand. They also can use a numbing gel that can help to a degree and of course time to let it work and of course easier said than done, try to relax and picture yourself somewhere else. 

    The Turbt will be under general anaesthetic. But as explained to me by the CNS, too many GAs are bad for us over a relatively short period of time and no doubt taking up valuble theatre time so  cystoscopy or TULAs are widly used. 

    Thankfully my bladder cancer path has lead me to BCG thanks to an early diagnosis following a cystoscopy. Hopefully it will work well but time will tell with a relief of having an interum all clear cystoscopy or other look in. 

    All the best for the Turbt.