Long term effect of BCG treatment

Hi Richard. Sorry to hear of your long term after effects of BCG. It is a recurring topic on here. I have not had BCG, so not much help. Hopefully someone with experience will be along to help. Best wishes.

I'm in exactly the same position. Only had 2 sessions 6 months apart but have had to stop my 2nd session as I cannot pee without horrific pain weeks post last treatment. No pain killers help.  I'm lost as to what to do the stop this agony. 

Hello yewdee, I do indeed suffer exactly the same as you. Some days are better than others. I have had 14 BCG installations since 2020 and the latter treatments caused me to have chemical cystitis. Like you it disturbs my sleep, every morning I have to go a pain barrier and it usually subsides but not always. I have had 8 installations of Ialuril which did help with with the painful spasms, they have but disappeared but I do get occasional shooting pains as well as the need to pee regularly. I do drink a lot of water to help ease the discomfort. I have been on solafenacin but came off it as it didn't seem to help. I had my last cystoscopy in December and was clear of cancer just a very inflamed bladder. Fingers crossed it improves.

Jacaranda07 I Thankyou so much for your reply. How you are suffering is identical to my experience and its not good.

Would you be interested to get in touch to chat and compare our experience? Talking it over with someone might help us both

Richard 

Yes I don't mind if you think it will help. I'm not sure though about giving out an email on here will be ok. Certainly not a phone number.

Hi guys. You can talk privately via Private Messages. To find out how click HERE . Best wishes.

Good morning Jacaranda07 

I totally agree about giving such details out publicly. We can continue to chat on this blog if you would like to but there is an option to send chat messages privately if you wish to. 

Have you ever been given any information of types of food you should not have? The only Ithink  have been told is to drink 200 mil of cranberry juice daily.

Had a bad night last night unable to pee when my bladder went into spasm but lots of water seems to have stopped this for the time being. The nerve pain that goes up your arms I'm told is because the bladder is a hot spot of nerves and radiates from these, but it is a nasty feeling.

Like you say have good days and bad days but never good nights

Hello yewdee, I don't mind talking privately if you wish, save boring others with our specific problems. Sorry to hear about your bad night, I know what you are going through. My night was like most nights, I do get sleep, maximum one and a half hours at a time. I'm up peeing if I can, sometimes with difficulty. I have pain every morning to different degrees, this morning was particularly bad and I still have it as I type this. Water is my best friend, I know they don't recommend drinking it in the night but occasionally do just to keep the bladder ticking over and not want a build up of concentrated urine.

No I have never been told about my diet, looked it all up online. I know certain foods can be a trigger for disrupting the bladder. I leave alcohol out of the equation in fear of the consequences. It's so difficult to plan anything for fear of pain and of course the need for a loo.

I also struggle with pain killers that don't appear to work. I do take paracetamol and ibuprofen and on the odd occasion cocodamol which I don't like taking. Like you I just want it all to ease, it's taking so long this time around.

Hello, I have just joined the chatroom. I have had 6 treatments of BCG and starting another lot in early May. Already all your comments have been a help to me as I am experiencing the same painful episodes and unable to sleep, occasionally for no more than half an hour before having to visit the toilet and hoping to be able to pass urine. I am finding that I am in more discomfort lying down rather that sitting up or standing,  do any of you find the same ?  Thank you.

Hello tommyboy, it's funny how you mention having discomfort lying down. I have exactly that problem, particularly in the mornings whereby I cannot lay in bed too long and have to get up. I am more comfortable sitting up in an armchair. 

I'm further down the line than you, I also have a struggle walking too far because of the discomfort from the bladder. I used to enjoy walking but that has now been curtailed. On a more upbeat note I will say I have had discomfort previously and it did disappear on its own, just this time round it's taken more of a toll. I remain optimistic that it will eventually dissipate as it did before.