Hi, Rachel I was reading this chat to see if anyone else has been suffering like my father. He had 11 BCG treatments before they stopped it as he was suffering so much from the side effects. That was about this time last year. Recently he had a Flexi cystoscopy which showed up a very inflamed bladder but as we nearly lost him when he had his last biopsy Via rigid cystoscopy they don't want to do that again so they're treating him now with iAluril treatments to help repair the bladder walls as they think it might be cystitis caused by the BCG. The reason for this post is he is in so much pain, he's had bouts of the same pain towards the end of the BCG treatments but recently it's got so much worse and the excruciating pain is mainly in his penis. I've spoken to the consultant and nurses about this but they don't seem to have any solutions or even explain or explore the causes. He's currently in agony and has been since last Sunday with a few hours here and there where it subsides a little. I wanted to ask is this common and/or can anyone suggest what to do, I'm at my wit's end seeing him in so much pain especially when we are all still grieving the loss of my mother a couple of years ago 

Hi Rachelt,

I know this is an old post - My close family member is also suffering from the exact same situation that your dad was in. 

He is 74 / M. First five rounds of BCG with the sixth one cancelled. The fifth round was done around three weeks ago and the pain is still there.

How did it work out in the end for your father?

Please share anything you can.

Hi so sorry about your close family member...unfortunately the pain wore my dad down and he was such a big strong man...my dad passed away 16 months ago...not from cancer from heart failure...but if I'm honest I think he was just to weak from the constant pain...i would just say as advise to make sure the nurse that does the BCG is aware as this seems a common problem for many but with not much information or facts on the pain ...we need to raise more awareness on this side affect...I'm sending best wishes and hope to your close family member and I hope the pain goes for him...Best wishes Rachel x

Thank you Rachel. I am sorry for your loss.

Thank you Rachel.

I read your early post - you said something about CBD, what is it?

All, if you wouldn't mind sharing your experience especially if you managed to get over the pain.

This post has got me very worrying. 

Hi, I have just read the posts and haven't been on here for some time now. I thought I would give an update from my side. It has now been almost 6 years since my diagnosis of bladder cancer and treatment. I am saddened by what I read but identify as I am still suffering from pain. This has not subsided since my treatment was stopped after my 12th dose of BCG almost 5 years back. I am 58 and mentally, emotionally strong which has helped me cope with the bad days! The days do vary and the pain dose subside once I have been to have a wee. But the intensity of pain varies from mild to excruciating. As per the other comments, my specialist and the nurses I have been seeing, have no answers for me. I have seen a pain specialist who has tried everything under the sun but to no avail. I agree that there is not much information on these side affects that a lot of us suffer. I also think that not much is spoken about as it can be an embarrassing topic talking about pain in your genital region. My protocol I follow now is an intermittent fasting life style and cook fresh food (mostly vegetarian), drink loads of water, no alcohol or cool drinks. I stay off processed foods and have cut out sugar from my diet as best as I can. I take Tumeric supplements and Vitamin D. If this has reduced the pain, it's hard to say but I do feel better in myself from a health perspective! I have tried CBD oil and didn't find it helped much with the pain. Saying that I have heard from some folk that it helps!. My personal opinion on the BCG treatment is we need to be made aware of the potential side effects and not just told that the pain will only last around 3 weeks after treatment and subsides. The reality is there seems to be a lot of people for whom this is not the case! BCG being pumped into your bladder at the high dose it is, will and does inflame the lining of the bladder to try stimulate an immune response. One can understand why over a prolonged period this can cause the side effects it does. I'm sorry I can't be more positive in giving advice on dealing with the pain. I still live in hope that things will start to subside and my aim is to keep the cancer at bay by looking after myself physically, mentally and spiritually.

Hi Capey - thank you so much for your response. Its encouraging to hear that is possible to manage the pain as you have done with diet control. I agree that patients need to be aware about the potential side effects - but BCG seems to be affecting people in so many ways. Some sail through it and some suffer as a result. 

Is it the case that once BCG has been administered, which appears to work in different ways i.e., some suffers with pain and some don't since Doctors have no way of knowing how it could affect the patient? Is there anyway of reversing or once its administered then the patient just have to live with the consequence (I know this might be a silly question but I better ask!)?