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!

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

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