BCG Treatment

Hi Dorne, really sorry to hear you've been in so much discomfort. Hope your consultant will be able to help. Some of us get though BCG relatively easily and others experience extreme inflammation. I did get inflammation but only towards the end of my 27 doses. It is still gradually healing 20 months since the last dose. Fortunately there are many different treatment options for bladder cancer so if BCG is too difficult for you there will be another option. Good luck with scan results. Hx

Hello Dorne, I have every sympathy with you. I had to stop my BCG solely (after 14 treatments) because it inflamed my bladder. My last instillation of BCG was in September 2021. I still suffer to this day with pain/discomfort, I too take amitriptyline and cocodamol to try and keep it under some manner of control. I don't suffer so much with urgency or frequency  (although I have my moments) it's just the involuntary pain pangs and background discomfort that you are constantly aware of. Strangely my sleep isn't too bad and only up a couple of times in the night.

I saw my consultant last Friday about all this because as you stated it does get you down, it's as though your bladder controls your life. He did say, as he's said in the past, it will go eventually. I am having fortnightly Ialuril instillations to help repair the bladder lining and they do give me some relief. I have bad days and better days, there isn't a day that passes where I have complete freedom from the discomfort. Let us know how you progress with your treatment, take care.

Hi  Dorne, I just saw your msg. I had CIS as well and had 10 BCGs. Since the 10th one which I had on May28th I've had non stop pain all over the bladder and sharp shooting, pinching pain. Also still getting pain when urinating and urge incontinence. 

I was just wondering how you were doing and if it has subsided with you now? Sounds like we're going through very similar symptoms and it's now been over 3 months of this trouble for me.

Thanks

Jan.

Hi I to am having laluril once a week for 8 weeks. I am on my 6th and still no relief am awaiting my camera on 26 September so will be able to see any change, certainly doesn’t feel like it as in constant pain and the urgency to go to the toilet is still there. Take care hope yours starts to wirk

Hi Jan unfortunately no change even with pain medication (8 sessions) which I self catheterise and insert myself, have my camera on 26 Sept so need to see if any change as it certainly doesn’t feel like it. It’s got to the point where it rules my life. Take care hope you find some relief soon 

 Thanks for the replies Dorne. It's so frustrating when you have this pain and nothing seems to work. I really hope eventually it disappears  for you. I'll  have to see what happens after my next flexible. Also got an appointment for a uro  physio. 

Good Luck with it all. 

Hello Dorne, I know what you mean regarding the Ialuril, I did have 8 weekly instillations at the front end of last year which didn't solve my issues. I have had monthly ones beginning this year again with only marginal improvement. I feel as I need to do something because the discomfort wears you down.

At.moment I'm not suffering too badly with the urgency but currently have a feeling of heaviness which always feels present. It inhibits my lifestyle to the point of having to carefully plan anything I want to do. I get frustrated with the lack of help and understanding from the docs/nurses who I feel brush you off at times. I take paracetamol/ibuprofen/ cocodamol but they don't seem to help much.

I know it's not much help but you can take comfort from the fact you aren't alone.

Chris