Dear Capey

I am wondering if you are still having pain now or it has gone. My dad is having the same problems with severe pain in his Penis it's unbearable for him he also has haematuria. I can't bear to see my dad suffering the way he is, he has been on maintenance BGC now for a couple of years after his initial treatment and is cancer free, but the pain is taking its toll and he is just so drained, its ruining his life. Please let me know if you managed to get your pain under control and if so how. Really hope you are now OK.

BW Rachel

Hi Rachel

I am so sorry to hear how your dad is suffering with the pain. Unfortunately, I'm still suffering. The pain varies from mild to intense pain and the only way to relieve it has been to go to the toilet and try and pee (which in most cases) is painfull. This has been going on for alomost 4 years now. My Urologigist has been unable to help and I have seen a pain specialist who has tried everything under the sun from medication to various treatments but to no avail. I have no idea why some of us suffer from pain more than others and why for the few of us it doesn't seem to subside.

The things I have been doing is drinking loads of water and staying free form cafeine and alcohol. Althgough the intense pain is more in the urethra, it's when the baldder fills up that I start to feel the pain. I've also changed my diet to haelthy foods and cut out sugar. I'm sure these have helped but not healed the situation. Sorry that I can't give you any positive guidance.

You mentioned he has haematuria! This is a little concerning. Has he seen his consultant regarding this? It is worth having this checked out. Regarding the pain, he can ask his consultant or GP to prescribe some med's for neuropathic pain. This did help me for a while as the pain is definatley neuropathic in nature.

Best wishes

Thank you so much for your reply I'm so sorry you are still suffering...we have an appointment Friday with GP and I will be going along with my dad...as he is a proud man that won't make a fuss...hides his pain so when he is saying it's unbearable...well I can't imagine how bad it must be...he still sees his urologist and they have not really said much about the haematuria...at least we can hope for some better pain relief...I will ask for neuropathic pain relief thank you once again for your reply...stay strong keep fighting...best wishes to you x

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...stay strong and support as best you can...talk openly...its hard for them as tge pain is in a place they don't want to talk about...so just be as open as ypu can about it xxx

Thank you...stay strong and support as best you can...talk openly...its hard for them as tge pain is in a place they don't want to talk about...so just be as open as ypu can about it xxx

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.