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?

Hi Gary

Sorry to hear about your struggles. I can only but sympathise. My consultant stopped the BCG treatment as well, due the pain. I have been seeing a pain specialist as the consultant didn't know what else to do to resolve the pain as everything he tried didn't make any difference. The pain specialist has tried various medications from Amytriptalin, Gabapentin and even Morphin. None of these did anything for me and the side affects were not pleasant. I have had a steroid injection into the pelvic area but even that did nothing. I'm now not on anything and trying to cope and treat myself as naturally as possible. I drink loads of water and the hot drinks I have are herbal teas (Tumeric and Fennel). I have cut out caffine and alcohol to keep all stimulants away from my bladder. I have also changed my diet dramatically and eating loads of fruit and veg and only having meat once a week (very hard for a South African!!). Although I still have the pain which comes on when I need to pee and then painful to pee, the intensity has eased dramatically. I have also started drinking water throughout the night when ever I wake up from the pain with the need to pee. I found this has reduced the intensity of the pain that I was experiencing first thing in the morning and usually lasted for a couple of hours. The pain specialist seems to think that the pain is related to a combination of the treatment which agravates the lining of the bladder wall and instrument damage to nerve endings (all the cystoscopies and catheters we have to endure. I had my last cystoscopy a month back and the urologist says my bladder wall lining couldn't look any heathier, so I'm convinced that what I'm doing must be helping to some degree. My consultant says that my case is unique (not that is a comfort) but it's made me determined to get through this regardless! It's coming on 2 years of the pain and if I look back now, the pain has definately eased up compared to the intensity and frequency of before. Keep the faith and hang in there!

Hi Gary

Sorry to hear about your struggles. I can only but sympathise. My consultant stopped the BCG treatment as well, due the pain. I have been seeing a pain specialist as the consultant didn't know what else to do to resolve the pain as everything he tried didn't make any difference. The pain specialist has tried various medications from Amytriptalin, Gabapentin and even Morphin. None of these did anything for me and the side affects were not pleasant. I have had a steroid injection into the pelvic area but even that did nothing. I'm now not on anything and trying to cope and treat myself as naturally as possible. I drink loads of water and the hot drinks I have are herbal teas (Tumeric and Fennel). I have cut out caffine and alcohol to keep all stimulants away from my bladder. I have also changed my diet dramatically and eating loads of fruit and veg and only having meat once a week (very hard for a South African!!). Although I still have the pain which comes on when I need to pee and then painful to pee, the intensity has eased dramatically. I have also started drinking water throughout the night when ever I wake up from the pain with the need to pee. I found this has reduced the intensity of the pain that I was experiencing first thing in the morning and usually lasted for a couple of hours. The pain specialist seems to think that the pain is related to a combination of the treatment which agravates the lining of the bladder wall and instrument damage to nerve endings (all the cystoscopies and catheters we have to endure. I had my last cystoscopy a month back and the urologist says my bladder wall lining couldn't look any heathier, so I'm convinced that what I'm doing must be helping to some degree. My consultant says that my case is unique (not that is a comfort) but it's made me determined to get through this regardless! It's coming on 2 years of the pain and if I look back now, the pain has definately eased up compared to the intensity and frequency of before. Keep the faith and hang in there!

Great to read some new posts on here.

Just got back from my first post tumour op Cystoscopy. Had the 6B CG, I was flying until 5, when my prostate started a wee bit of bleeding  I had the Covid vaccine the next day and it went downhill from there. UTI, flu, blocked cynuses, ached, tiredeness and pain. Not sure which was which to blame, more the bcg I think.

I kept no.6 down with hopping around for the last 10 mins a bit.

Cystooscopy showed inflamed bit, which I reckon is where the cut was. This I can feel if I sit in a certain position, drink more than a bit of booze, or have sex! All the fun goes in this game. lol.. 

So nervous wait now for biopsy result. Did not expect this to happen just 3 months post op, Use ibpropofen to help, which it does. The odd thing is, if I move around, even for long walks etc, I am fine, no pain for hours. Shame I have a desk job!

Of course in this process, the next thing is more treatments. The good thing is there are plenty of survival stories on here, which gives me faith,

I'm up to 15 BCG treatments now and apparently clear of the early stage agressive cancer.

The only problem is the soreness whilst peeing and the almost continual urge to pee whenever I move - at least every hour throughout the night and more often during the day

My last treatment was by far the worst yet regarding these after effects and they are not reducing with time so I'm not sure if I could cope with any further BCG. I have a rigid cystoscopy booked in three months time and, fingers crossed, no more BCG planned.

Having read through the previous posts at least I find I'm not the only one with these problems, however, there also appear to be very few happy outcomes so I'm not very confident that things will improve. Only time will tell. Gloom !

Reading previous posts I've noticed a few comments regarding the use of Bicarbonate of Soda or womens cystitis pills helping to mitigate the pain of peeing. Anybody have experience of these treatments ?

Hi All, 

Seems posts have dried up a little. 

I am on 4th of first 6th session and experiencing a lot of symptoms and side effects described. 

I took the option of having a permanent catheter during these 6 sessions, as didn't want the prolonged sphincter and urethra damage of constant in and out with the application catheter. 

So i have a 500ml urine bag during the day and a 2ltr bag on a cage at nights.

I find i can drive ok but occasionally have to do an emergency wee stop to empty the bag.

One problem I'm getting now is a white/yellow discharge through the urethra even with the catheter on. It stings profusely and looks like pus. Has anyone else experienced this?

I do take 30/500mg Codeine/paracetamol to help with the side effects but need lactulose to combat the constipation. 

Of course i don't drive when taking codeine as usually only use it at night or the day of treatment. 

I feel so much empathy for you all and your symptoms,  as like most of you, i thought i was the 1 in a 1000 side effector lol.

But looks like that should read 999 in 1000 as only one person has reported no side effects. 

I'm not sure i could cope with the 3 year BCG package and will request removal of the bladder if symptoms do, as seen, get cumulative. 

Thankyou all for providing input and i wish you all the very best outcome and a pain free future.

Regards Lloyd 

Good news !

It is now six months after my final BCG and things are settling down at last. I  now pee a lot less frequently and with little discomfort. The improvements have been very slow, but very welcome.

On top of that, a flexible cystoscopy a couple of weeks ago has given me the all clear - at least until the next check.

Well, during my 2nd BCG Session back in November 2021 i had a nasty bladder spasm with the BCG still in my bladder before the 2 hours were up of holding it in there.

It was an awful experience, I felt the BCG shoot up my left Ureter and into my left kidney. It felt like Mike Tyson had rabbit punched me an i fell to the floor for about 15 seconds. The pain was unbelievable.

I told my CNS nurse at my next BCG appoint the next week and she said it was normal to have bladder spasms, so i just took that as the "NORM", anyway I had terrible pains in my left kidney and expressed my concerns to the CNS nurse at my next visits for BCG. She just shrugged it off.

Three weeks after the first  BCG Installations the pain was getting unbearable in my left kidney and I decided to speak to my GP. She put me on Antibiotics and still no joy with the pain. She then arranged a CT-Scan with Contrast, this was 12 weeks later on 24th Feb 2021. They found a 3.7cm growth on my left Kidney caused by the Bladder Spasm and BCG.

The Consultant put me on a 4 week strong course of Antibiotics and still no joy with the pain. So i am booked in for another CT-Scan with Contrast on 18th May 2022. I am on strong Co-Codamol and Lactulose to help with the pain.

I have searched the Internet and found an excellent study in the States that looked at all the various side effects of BCG theraphy and would like to share the link with you all.

pubs.rsna.org/.../rg.2019180014

I just hope the consultants believe me now.

Good luck everyone

Dear Sam60,

Fantastic link, thank you very much. By far the clearest and detailed explanation of BCG.

For me the BCG problem came towards the end of my 12 sessions, with acute pain which sort of crippled me for months.

Hope all goes as well as possible for you, take care....

Philip