BCG treatments cleared my non invasive bladder cancer, but …..

I'm glad to say I didn't have BCG & suffer this problem, but I have come across it. I understand that either the bladder has shrunk, or is too irritated. You may need to see a specialist nurse & retrain your bladder, by gradually trying to hold on for longer & longer. Certainly get it investigated to see what solutions are possible.

Thanks for that advice

Hi, I've had 10 BCGs and the last one has left me incontinent so much so that I just can't keep it in at all. 

For 4 months after the 10th BCG I was experiencing excruciating pain. It was a pinching, sharp stabbing pain which felt as though it was coming from up there somewhere. 

The bladder was obviously very inflammed 4 months later. I'm glad to say that it seems to be getting better but I still can't control the peeing. I'm currently waiting to see a Uro physio. Also got a CT scan and flexi coming up as well. .

I'm sure the BCG might have irritated the Prudendal Nerve and the pelvic floor muscles have clearly been affected. If it continues for you maybe you should ask to see a physio. 

Good Luck.

Jan.

Hi Jan

thanks so much for your reply. I’m glad I’m not alone in experiencing this, but sorry to hear you have been affected in the same way.  I will find out whether I can see a uro physio too as that sounds a good plan.  Thanks again, and very best of luck to you. 
Sue

Hope you get it sorted. Can I ask have you had any pain at all? 

Thanks

Jan

Jan, I had very bad pain after my last BCG, but that pain seemed to be around the entrance (outlet side) of my bladder.  It was so intense that even the strongest painkillers and anaesthetic creams given made no difference, I couldn’t walk with straight legs, even worse lying in bed at night.  It was a two week period of pure hell before the pain began gradually to subside. My oncologist told me he was going to cancel the next (and would have been the last) BCG treatment, so I ended up one treatment too few. Its now been three months since that treatment and my three flexis have revealed no further cancer signs.  No further pain. Just the incontinence! Which is vastly preferable to bladder cancer, I know, but I'll try to get it sorted.

Thank for the reply Sue. I've had weird pains all over the pelvis. Also pinching, stabbing pain that seems to be coming from either the cervix region or as you say the entrance to to bladder. 

Also pains down the right side of my pelvis going towards the groin. I know how you feel. Walking sometimes was very hard due to the pain.  Hopefully I'll find out what's going on soon with ct, flexi and physio.

This is the worst its ever been. Its good to talk to someone who knows exactly what your going through. Thanks.

Best Wishes 

Jan.

I really feel for you Guys, so thanks for sharing. Your difficulties are reassuring me that opting for the full RC will at least spare me those experiences, albeit in exchange for a completely unknown 'change of life'!