Long Term BCG side effects

Hello Jan, I have posted here several times about my hassle with BCG treatment. Long story short I had 14 instillations stopping in September 2021. It was halted because it caused inflammation of my bladder. Whilst it proved successful at halting the cancer it caused me all manner of other problems. Burning, bladder pain, spasms, urgency. To this day I still have some sort of discomfort although it has improved it never has quite gone away. I have had 2 lots of biopsies done, one last year and another last month on red patches, both have proved negative, thankfully. As it stands I now am not suffering so much with urgency and I have lost the burning since my latest procedure. I was told from the outset that it was BCG cystitis that caused the issues and it will eventually disappear over time, I just didn't realise how long that time was going to take. Take care, Chris.

Thanks Chris, yeah  like you say it's great it's kept the cancer away but the side effects are nasty! Sorry that your still having  effects from it.

Did you find it painful to sit down at times as well? So, did they say that all these pains etc we're all BCG cystitis? I was reading about Prudendal Neuralgia and I'm wondering if the BCG could have irritated the Prudendal Nerve as these symptoms are very similar. The shooting, pinching pain etc.

It's the first time I've had these other pains so was getting a bit worried. I have started taking anti histamine as this helps with Interstitial Cystitis and I have to say they've really helped 

Thanks again Chris. Hope your symptoms total disappear soon. 

Although I wouldn't have changed my decision it would have been good to have the after effects of BCG explained. I do have discomfort sitting and sometimes laying down. Ironically enough at the moment walking or standing can be more comfortable. This hasn't always been the case for some months it's been the other way round.

I have taken all manner of tablets including anti histamine, of course what works for one doesn't work for the other. I can also identify with different pains, since my last procedure I can wake up with some different discomfort that hasn't appeared before, I just hope it disappears. It's an ever changing problem, like you I just want it to go as it does impact your lifestyle.

As much as I wouldn't want anybody to suffer this way it is good to talk to someone who knows what you're going through. Do keep in touch on here as it does help to hear if there are any solutions that may help. Take care, Chris.

I certainly will keep in touch. Thanks for your responses.

Got all my appointments in October so I'll see if they come up with anything.  It is great when you can talk to someone who is going through the same thing. Thanks!

Interesting as well how these symptoms change and can be quite random in that suddenly a new pain will start somewhere else. 

Take care also.

Jan.

You are welcome, I have my next hospital appointment for another Ialuril instillation which supposedly helps reline the bladder on the 26th of this month, I just hope it doesn't rock the boat. I will of course ask them about my latest problems. Yes do let us know how your October apps go, I wish you well. 

Chris 

Good luck with your appointment as well Chris. I'll mention the laluril instillations to them maybe I might benefit from that.

Take Care.

Jan

I just wish I could get the ialuril tried on Mr D, as he's up several times a night. I rang the GPs, they said they could not prescribe this I'd have to ask the consultant. So I rang the consultant's sec, nothing for weeks, rang again, she was short with me saying she was still waiting for an answer. His regular 6 monthly flexi came round, while 'all clear' is what you want to hear, it was a different consultant. he said he'd write to the GP , but didn't. So we are back to square one months on. Anyone else had this, or any ideas how to overcome it please? Btw there is no such person in our lives as a CNS.

Thanks, Denby

Hello Denby, when I was initially suffering from inflammation it was casually mentioned that Ialuril might be a step forward in helping. But it wasn't easy and you felt the need to push it. I have no idea what the reluctance is to administer it, whether it's to do with budgets I just don't know. I count my self fortunate to receive the first 8 instillations last year and a complete bonus to get the ok to have monthly ones this year. It always has to get the go ahead from the consultant, I was very lucky to have a nurse who was onside and managed to convince my consultant of treatment. Take care, Chris