BCG side effects

Hello LoopyLouLou, if it's any consolation I did have these problems after my 12th BCG treatment and it lasted for about 4 months then almost overnight it did completely disappear. Then I had 2 more installations and it kicked it off again. That was last September and up till now I still have problems as you do. Like you painkillers do not really work, they told me there is no magic bullet. I take it you watch your diet, certain foods and drink I know tends to kick off problems. I wake through the night with pain and it does hurt to pee at times. Each day is an ordeal, I sometimes struggle to walk, my everyday lifestyle is limited depending on degrees of pain and discomfort. Difficult to describe to other people what you are going through but I know exactly how you feel. I'm just putting my faith in it repairing itself as it did before and to get back to some sort of normality. They have ceased my BCG installations.

Gosh I do sympathise.  I was never told of these side effects.  They are horrendous.  Like you I have days where I can't walk, I have not slept for 4 weeks now, I'm peeing or rather dribbling like an old tramp and its like peeing acid.  I'm not sure I can suffer like this for months.  And I'm certainly questioning whether I'll continue the treatment.  

Thank you for replying.  Can't say its good to hear from a fellow sufferer, but at least I can hope now it will clear up in time.  

Hello LoopyLouLou, I think there are a lot of us out there. I get a little bit frustrated that we don't seem to get much advice from the medical side of the argument. I feel like you that you sort of stand alone with not a lot of back up. I do occasionally ring the nurse at the hospital clinic but hate to bother them too much simply because they are busy people. 

Yes it wasn't fully explained what the downside of the treatments would be. You didn't say whether you are careful about what you drink or eat which of course have a large bearing on how we feel. Keep us posted on your progress.