Cystoscopy - brutal and traumatic?

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. 

Hi HarryK 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.

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. 

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. 

I have had the instillgel numbing gel each time and tbh it did nothing to make it less painful for me. When i had a catheter in coming out of hospital once that also caused me untold misery and pain. From everything I've seen some guys have it really bad where others just don't, and the worst part is trying to relax your body when something is being shoved in  a hole that shouldn't have things shoved down it. 

I've had long term in-dwelling Foley urethral catheters continuously since late 2018 as part of my palliative, symptom driven treatment regime. No.35 was replaced last week at 8 weeks. Up to a couple of years ago they were in for 12 weeks but blockages are a problem for the final few weeks. I mention this because the catheters are size 16CH, very similar to the size of a flexible cystoscope. I have only had three flexible cystoscopies, all with the standard Instillagel numbing/anti-infection gel also used during catheter replacement. I find catheter replacement is very uncomfortable, often painful, the removal of the old catheter being the worst stage because it is difficult to insert much gel with a catheter still present. Pain lasts for 3-5sec. It will vary for each person. A flexible cystoscopy, although similar in principle to catheter procedures, differs in a couple of significant features: The scope is less flexible than a standard catheter and, to enable the lens of the system to be clear as well as inflating the bladder slightly to improve visibility of features, purified water is pumped in during the procedure. With me, the water escapes by by-passing. I find the  pressure exerted on my scarred bladder to be very painful (scarring from radiotherapy of a 7cm non-muscle invasive lesion and two subsequent TURBTs). I have to endure this pain for 5 minutes or so whilst the camera viewing takes place. My bladder has shrunk due to long term catheter usage, so the water flushing  quickly fills my bladder to max tolerable capacity of around 270ml, then some more. At that stage I start to crush the hand of whichever nurse has offered to hold my hand . I've got to have a flexi and probably a TULA in the same sitting in mid November. I am not looking forward to it!  25 minutes + having my catheter dragged out beforehand. Wonderful.

I feel for you RayMK I've only ever had that one they left in, did wake up with one a different time but they took it out after coming round before releasing me. Did hurt when I had the second one out but I did have a urine infection but I begged then to take it out caise it was cuaing me misery but after a week or so worth next to no sleep I didn't care how much it might hurt at that point. 

In fact I remember being at the hospital with my dad before he died and he was a stoic man during his cancer and they had closed the curtains to put a catheter in for him and he was whimpering and groaning quite a lot having it put in, I'll never forget hearing him going through that.

And like I said he was so stoic and brave right until the end. He was terminal by this point and he put up with so much and rarely complained, not being able to eat, skin peeling terribly on his feet, stoma bag etc etc. So yeah makes me feel like a complete wuss when I think of everything he went through all the operations etc to remove his bowel etc. Chemo and radiotherapy etc etc. 

Sorry I'm rambling a bit now 

I have got to know you over the years Ray and you will sail through your next procedure albeit painful and uncomfortable. I have to use a 16 CH Catheter twice a week to  empty my bladder keep my water pipe clear  therefore flexible cystoscopies and BCG Instillations are painless and easy for me. My thoughts are  with everyone finding these procedures painful and frightening.

Hi HarryK, I think these procedures must be so much worse for men and I’m sorry you had such a traumatic experience. If you get someone rough performing the cystoscopy it will be more painful.There was one urologist I used to dread seeing as I knew the cystoscopy would be painful. I do think you get used to them when you have to have them regularly as I did prior to bladder removal.The more relaxed you are the better it will be but it’s not easy having any invasive procedure.The first one I ever had was by far the worst in terms of pain and bleeding. Fingers crossed that future cystoscopies will not be as bad for you. Best wishes Jane 

My Bladder Cancer Treatment Update

I’ve now had my results following my operation on 14 October to remove a bladder tumour.

The good news is that it’s low-grade, non-muscle-invasive bladder cancer. This means the cancer was found in the inner lining of the bladder and had not grown into the bladder muscle.

The surgeon removed the tumour and I was also given a dose of chemotherapy medication directly into my bladder immediately after the operation.

At present, no further cancer treatment is planned. Instead, I’ll have a camera examination (flexible cystoscopy) every two months initially, followed by further checks over the next 12 months to monitor for any signs of it returning.

I’ve also recently been diagnosed with a urinary infection and have been prescribed a seven-day course of Trimethoprim antibiotics.

Overall, the news is encouraging, and I’m feeling much better than I have for a long time. It’s now a case of regular monitoring and taking things one step at a time.