Hello Capey

I'm very sorry to hear that you're struggling with side effects from your treatment. It sounds as if it's really impacting on your daily life and I can imagine that it is incredibly frustrating for you. 

I'm unsure if we've any members here who have been through similar but hopefully someone may see your post and post to share their experiences with you. 
You might also want to have a look at the Fight Bladder Cancer and Action Bladder Cancer UK websites. It may be that by contacting a cancer specific organisation that you're able to connect with others who have been through the same. 

You're also most welcome to give our team of nurses a call if you'd like to chat things through with them. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I do hope that things improve for you soon. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi, I have had my 14th bcg today and as always peeing is extremely painful and also have blood clots coming out. Despite taking Co codamol before treatment and after the pain is quite intense, and spend rest of the day in the bathroom. A friend who also had bladder cancer told me he was taking Tramadol for the pain and said that was much better, considering I have been given the all clear I still have to have all 27 treatments . I don't really want to do this but if it stops the pain I may ask about it, has anyone else been taking Tramadol for the pain? 

Hi everyone.  I am new to this forum.  I wanted to share my experience i have had with stage 3 non invasive bladder cancer.  I was diagnosed 2 years ago aged 48, I have had numerous turbts and currently on bcg Maintenance therapy. I had 2 induction courses because the tumour came back because I didn't have any treatment for a year due to covid.  To cut a long story short I have decided I can't continue with the bcg, I am in the most excruciating pain ever, I've been prescribed tramadol and this isn't touching me I can barely pass any water and spend my days and nights filling treatment, on the loo, has anyone else felt like giving up bcg or have give it up ??? Thankyou 

Hi jojoxoxo, sorry to hear about your pain. You are not alone! It's now been 3 years since my diagnosis with non-evasive bladder cancer.  I had around 9 BCG treatments but they had to stop BCG treatment due to the excrutiating pain. In most cases this pain slowly goes over time (usually no more than 3 weeks). I have been in pain for 2 years, and it hasn't subsided. This is unique and not the norm. My Urologist has checked everything and can't find any underlying problems. I was refered to a pain specialist who tried numerous treatments but to no avail. I haven't had any BCG treatment for around a year and a half now. With my last custoscopy in January, the result was very good with the bladder lining looking very healthy and no sign of the cancer returning. But the pain continues. When I did some research I had found that this is a side effect of BCG, especially considering the high strength dose we have pumped into our bladders over a period of weeks. Unfortunately for me, pain medication did nothing. I was even put on Morphine but to no avail (and would not recomend that!). They tried various neuropathic medications like Gabapentan (a first-line medication for the treatment of neuropathic pain) and also Amitriptyline, which helped slightly for a while and then nothing. At present I'm not on any medication. What I have found helpful in all this is changing my diet. I have done loads of research on diet and cancer. I have completely changed the way I eat and what I eat. I primarily eat loads of fruit and veg and stay clear of processed foods and sugary foods. I have cut down on meat to once or twice a week max. I drink loads of water and stay clear of anything that may aggrivate my bladder. I'm pretty certain that this has helped keep the cancer at bay. I hope things improve for you.

Hi, jojoxoxo, yes I feel like giving up also, this week has been one of the worst, normally pain stops after a couple of days but not this week. I am having 15th bcg this coming Monday and now have Tramadol for the pain but reading some of these replies I am thinking I should stop now before even more damage is done. I was told cancer had gone so do i need to carry on? I don't think I want anymore as the pain the bleeding and getting up every hour of the night to pee is knackering me out, any advice is very welcome 

Hi, I have just found this post & am interested to see how everyone is doing now? Im sorry to hear of your situation & hope things are better. My husband has had 13 treatments & suffered the excrutiating pain you all describe after his 14th round of BCG. The pain lasted a few weeks & he was prescribed tramadol. He is Ok now but we are worried about what could happen after the next round.  Any advice anyone can give on further treatments would be appreciated.  I would hate to think such pain could be permanent. They don't tell you any of this at the outset ! 

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