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