Hi everyone! Found all your comments useful! I am going for my 14th BCG treatment tomorrow. Last weeks symtoms were more difficult to manage; sleepless nights as constant throbbing & feeling to urinate every 30 minutes. I do not mind the flu symtoms as they can be controled by painkillers.

i find bicarbonate of soda mixed with water effective; I also drink green tea with turmeric! 

good luck to all! 
 

Hi Sof. As you can see we don't chat much. What proportion of those having the treatment we represent is anybodies guess but it gives you some idea for comparison. BCG (for bladder) has apparently being in use for ~40 years so not new although when I saw one of my eperienced Dr. groups GPs recently he/she had little or no knowledge of it and I was her first patient having it, so don't assume your GP will be uptodate on symptom handling.

I have had 15 now and awaiting next cystoscopy. Some of my short term pain (1(2) days after) I suspect I can now attribute to catheta handling skill of operator. Maybe its me (physically) but if it is not quick and straightforward then a painfull evening often follows. This got worse as the treatments progressed, although I had the same operator most of the time.

I fill in a problem summary sheet each week, but it is only filed in my treatment record; no-one collates the data and makes use of it.

The Oxybutinyn hydrochoride I was taking to ease bladder pain has been abandoned for a slow release version Darifenacin. The appalling dry mouth/lack of taste of the former has disappeared; whether it is effective still to be decided. It is really only at night I have problems. Nightly Ibuprofen handles the early nighttime. I think what and when I eat and drink in the evening plays a significant part of how good a night I am going to get. I always have a little something before the pain-killers though for safety. My last hospital urology consultation was cancelled at a days notice. Typical now I gather.

I was originally diagnosed with a papillary tumour at the beginning of 2015 and following a TURBT plus chemo was clear until a recurrence in January 2017 but this time it was found to be a CIS.

I had another TURBT and since then I have been on BCG immunotherapy. I've lost count of the number of treatments but it's a lot. ( the latest was August this year and my next are scheduled for February next year).

The early treatments didn't bother me greatly and I naively thought that the more I got the more used to it I would become but I couldn't have been more wrong!
 As time wore on the side effects became exponentially worse along with them lasting for longer and longer periods.

Until I stumbled onto this forum I thought that maybe I was just unlucky and in a minority but I now think that this is definitely not the case.

Having tried various combinations of pain relief and anti-cholinergics to no great avail, last month I decided to give acupuncture a go and after 6 treatments I feel better than I have done in months.

I thought I would share this as I know how miserable this BCG treatment makes us all feel and I approached it from a position of " nothing ventured, nothing gained".

I should also have mentioned earlier that since the recurrence I have been getting flexiscopes every 3 months and my latest confirmed that I have been clear for 2 years, however the BCG continues to the end of 2020.( All being well till then, of course.)

hi james just asking i have had the initial 6 weeks of the BCG then another three maintenance was agony all the way through (passing razor blades when i went for a pee ) had a great team to do it apart from the pain i was supported , just yesterday i had a cystoscopy to check the bladder which is still inflamed and the last treatment was in august think the nurse made a hasty mistake that day by carrying the treatment so fast i felt everything in pain during the procedure .(not nice )where as elaine the nurse that did it for me for the six weeks had no problem but had to go on maternity and she took her time bless her.

Not as brave as yourself with the treatment hat of to you for enduring that length of time .

i was just wondering what the mechanics involved and and is it easier for you now ?

Hello, im sorry that you had such a bad time , some people can sail through this with just fairly minor symptoms, unfortunately, this is not the usual case, as i mentioned previously .

i can only speak from my own experience , which i think was/ is fairly comprehensive, it falls into several categories really.

i'm assuming that you have had 9 lots of BCG now , as i mentioned in my previous statemnts that i personally found the procedures to be be worsening as the procedures progressed, as the side effects are cumulative, i found that the dynamics of procedure to be different st different times and with different people, for instance, the sphincter to my my bladder has tightened, making the opening to urinate through tight, and to expel requires more effort, thus more pain , you could mention this to your specialist , i went all the way through mine before, they , now decided to operate to ease the sphincter, another side effect of this is that due to the involuntary force of urination a diverticulum (hernia) has occured in the bladder creating more difficulties.

the cameras in the bladder fall into 2 categories rigid where you are in theatre and sedated and  flexible 

the flexi is fairly straightforward, it is passed into the bladder and sterile solution is pumped into the bladder, you are awake for this procedure , i found the first few to be ok but as the bladder has more doses of BCG and cameras they do get uncomfortable.

you did not leave your name , but if you need any other specifics answering please don't hesitate to ask.

regards James

Hi James 

Thanks for your reply, I posted a dual reply to both you and James earlier.

Jon

Hi everyone

I haven't posted for a while but I'm interested to know if anyone has experienced or is experiencing anything like myself. My BCG treatment was stopped after 12 rounds due to the severe pain I was experiencing. That has now been over a year ago. My latest cystoscopy shows the bladder looking good and healthy and no signs of regrowth from the MRI scan. My urologist has tried numerous treatment to resolve the ongoing pain that I'm suffering but to no avail. I have subsequently been referred to a pain specialist who has tried a steroid injection which did absolutely nothing. They presume that I have had some neuropathic injury possibly from the treatment. I suffer day and night with the most excruciating pain in my urethra region that feels like broken glass/burning both before and during urination. The only way to relieve the pain for a period is to urinate. It feels like I'm going into a torture chamber every time I go to pee! When I experienced these symptoms in the early days they went within a few days after each treatment. Now a year or so on the symptoms haven't subsided at all. Incredibly frustrating and demoralising, especially as they don't know how to treat me. I'm hoping the next step of trying a pudendal neuralgia block will do something as the pain is definitely in that region. Keen to hear if anyone has had similar issues and if treated, what was successful. 

Hsy capey,

Currently expiriencing everything you are im 6 weeks post my 9th treatment and treatment has now been cancelled im more or less bed ridden (only 35) awaiting further biospys now have tried betmiga and tamsulosin both gave me an allergic reaction.

The urethral pain is so intense and seems to come in attacks and durong an attack incant urinate until it starts to ease.

I have very poor flow peeing 50+ times a day pain is up and down if my pee is clear its not too bad other than hard to start and onky peeing between 30-100ml at a time.

Any kind of walking seeks to bring on an "attack"  sitting is almost impossible most of the time too.

There seems to be some evidence that pelbic floor issues can arise from catheterization particularly the nasty 3 way massive ones and that something called biofeedback and pelic floor. Training can help this is what I want to discuss next with my consultant. 

Not sure hiw youve managed this for a year pal you have my deepest sympathys its only been 6 weeks and ive had some very dark moments already not sure i could csrry on like this for a year or more id rather them remove my bladder. 

Hope youve made some progress since this post and it would be nice to continue to hear how your progressing.

Garry 

Well well, just got notified by email that this thread has posts. Sorry to hear these stories of chronic pain. Four months on from my 12th BCG, and I am quaffing co-codamol, neurofen, amitryptiline and cimetidine, with movicol and senna to battle against the codeine. The pain is nasty and rarely subsides, the flexible cystoscopy showed a red raw inflamed bladder so BCG now paused, on to occasional looks up the tube to see if cancer is returning. Cancer seems to have been removed, but the day to day price to pay in pain is quite an eye opener. My sympathy to any and all fellow travellers; it's a *** tunnel to pass through isn't it?

Of course, there's no guarantee of passing through the other end of the tunnel and finding yourself in the physical world rather than the spititual realms. I'm not at all sure I've prepared myself for that possibility yet. What larks, eh?

Well well, just got notified by email that this thread has posts. Sorry to hear these stories of chronic pain. Four months on from my 12th BCG, and I am quaffing co-codamol, neurofen, amitryptiline and cimetidine, with movicol and senna to battle against the codeine. The pain is nasty and rarely subsides, the flexible cystoscopy showed a red raw inflamed bladder so BCG now paused, on to occasional looks up the tube to see if cancer is returning. Cancer seems to have been removed, but the day to day price to pay in pain is quite an eye opener. My sympathy to any and all fellow travellers; it's a *** tunnel to pass through isn't it?

Of course, there's no guarantee of passing through the other end of the tunnel and finding yourself in the physical world rather than the spititual realms. I'm not at all sure I've prepared myself for that possibility yet. What larks, eh?