Excruciating pain after BCG Treatment

Morning I to had the same issue and after many nights of no sleep ,I  was advised to drink lemon and barley water plus Cystitis relief sachets which after checking back with nurses as they said on instructions not for males did take them and they did ease the problem in a couple of days ? Cheers Keith 

I didn't have BCG myself, but understand that it's quite common for side effects can get worse. There is some debate as to how essential the maintenance doses are, so maybe it's time to stop having BCG? Best to discuss with your consultant.

Hi Don,

Pretty much the similar thing happened to me after my 18th instillation (March 2025). Maybe with not as much pain as you're going through.

My last biopsy (May 2025) showed my bladder was very inflammed, but no reoccurrence. I was prescribed some Veriscare medication to help with the urgency, but that didn't help. 

Took a few months to settle down and is better now. I mentioned this to my consultant and they said to see how it goes and they might reduce the dose or just do two installations.

I've found the effects certainly have got worse as the course goes on.

I'm weighing up if I want to do anymore. Some trust's only do 18 instead of 27 and I understand that there is some research into the benefits Vs damage of having more instillations after 18. But not read it or seen the research.

My consultant actually said many people don't complete the course, and getting to 18 was an achievement.

Of course it's a tough decision to make as it seems to be working, but boy it does come with a cost ( for me anyway)

I hope things improve for you soon.

Trevor 

Thankyou all for your prompt replies there’s a lot to digest from you all and certainly very informative, l wish l’d known about this forum sooner. It’s easy to feel isolated and alone when faced with something like this.

Again a massive thankyou to all of you.

Hi Don,

Sorry I forgot to say welcome to this forum. It has certainly helped me over the last couple of year's.

Everyone is incredibly friendly and the experience is invaluable.

Take care.

Trevor 

it shows how much knowledge some of these uro-oncology nurses have; it’s my understanding that it is perfectly fine for a man to take the cystitis sachets. The reason it clearly states on the label that these are not generally for men is when men have symptoms of cystitis it is often something which requires further investigation rather than taking an over-the-counter remedy. If you know your symptoms are from your BCG treatment and a bacterial infection has been ruled out, then taking the sachets should pose no problem if it offers you some relief.

I’m currently suffering in a similar manner to the original poster in this thread, however as a Type II diabetic, I cannot find a sachet which doesn’t contain sugar. lol 

Thankyou for that Trevor.

l’m going for a flexiscope next week to see how things are going with the BCG treatment, and all being well if the bladder is still clear l know they will want me to recommence the BCG treatment. If that was to happen it would be my 25th session of BCG, I’m not really sure l could take anymore? Of course l want to keep my bladder so carrying on with the BCG would seem my best option, but the painful after effects have been and still are horrendous.

l really am at a loss at what to do as no one at the hospital seems too interested in helping me with the side effects. Water and Paracetamol is all l get from them, and that does not work anymore!! It’s 5 weeks since my last BCG session and the painful side effects are still there!

l am not frightened of having my bladder removed but after going so long with the BCG l genuinely want to finish the course….Sorry if l’m boring you.

Finally would you know if there is a maximum amount of doses/ sessions of BCG before alternatives are offered.

Thankyou for your time.

Hi Don,

You having 24 doses already is an amazing achievement. I don't know the %s but I understand the majority of people on the BCG course don't complete the full 27.

I've seen varying posts over my time on here where people are assigned 18 or 21 etc. It seems to depend on the Trusts it would seem.

I believe the maximum is 27, but I'm really not sure if this can be exceeded.

It's not good that you're not getting any additional help from the professionals. 

The choice too do the final three instillations is yours of course. They can't force you to do it.

My consultant seems to be more sympathetic and has made some suggestions. For example reducing the dose, only having two installations and only keeping the BCG in for an hour.

My last biopsy showed a lot of inflammation caused by the BCG, which is why I couldn't hold as much and why the urgency was so bad.

You're not boring anyone for sure. I'm going through something familiar and I'm still not sure if I'm going to continue yet. Although I might try two instead of the three. Like you it took me a few months for my bladder to settle down... And it was painful and very tiring due to lack of sleep.

Thankfully I work from home full time, or I'm not sure how I would have managed.

I wish you all the best with your decision and hope things improve for you soon.

Keep us posted.

Trevor 

Forgot to mention that many people recommend Robinson's Lemon Barley water ( not lemon squash) to help with the symptoms.

I drink it quite a bit and although I'm not sure if it's helping it does help with the fluid in take.

Hopefully others might have some more advice.

Kindest regards 

Trevor 

Speaking out how the BGC treatment  is effecting you is not boring. 

Not good that you feel not listen to co codamol

Then the refux. ,headache   feeling tired,ect sorry its a list .. best is try to relax in bed as much as poss.first day, i not great at relacing im a real fidget so wasnt easy..

For a women to weee. It does sting quite a bit for the first batch then a gap  so the first started all over again..

It does put you down ,not feeling yourself.

Ive been told theres. Four batches of BCG infustuon for me  ,so i think it may depend on progress Oct got the flexi bit  so see how it is .then determines how  many more.

The only people not supportives is my manager at work. Being forced out .

Best wishes...