Hi 

i have had the first treatment of BCG 5 days ago ok at first  but after 4 days constant toilet trips day and night now day 5 a burning has started , I would love a nights sleep 

still peeing all the time prostrate slightly swolen  . Im at the begining  of my treatments 

O happy days 

Glad to report I've had the long overdue cystoscopy.  No probs found.  Waiting for BCG appointment now.

Great news Dhuk, hope all goes well for you!

Today is the first anniversary of my bladder cancer diagnosis. A week ago today I had my 12th BCG treatment, the end of my second maintenance phase.

I have to say the continual pain is fairly crippling, and at the moment the prospect of the third maintenance phase next Spring is appalling. I get by knowing the stinging pain will subside; it took a fortnight after my second maintenance phase.

The only point of this post is to howl. My apologies, not very noble....

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. 

Hi Philip. So sorry you are part of this horror. I was diagnosed with tumour in bladder 10 yrs ago. Since then apart from 3 single Ta tumours in the 1st 5 years, I have been gloriously cancer free till last june when I had 5 TaG3 tumours. I had 6 Bcg in August. Was fine. Now just had my 3rd of 3 maintenance. 10 days after my last I get horrible racking discomfort in my top half AFTER I have urinated and need to go non stop. So I am dreading my next maintenance. My wonderful consultant tells me the effects are cumulative. He also sd 'if it is uncomfortable it means it's doing some good'. I sd 'is that true?'. He sd 'no but we tell people that because it makes them feel better'!

Also my consultant who is a professor sd there has been some research showing that an 18 month course of BCG treatment and maintenance is equally as effective as a 12 month course. Anyone know anything about that? Would that it were so.

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!