Pains during BCG vaccine instillations

Hi Bazl and welcome to the forum. I am really sorry to hear that the BCG is giving you these issues. I am on number 20 and beginning to experience similar but not as tough as it sounds for you. I know there are a couple of gents on here that have struggled the longer its gone on. I am sure they will be along soon to offer any help or solutions they have tried.Well done for the 15 btw, its not an easy journey. This group of folk are lovely and supportive, I hope you stay on the forum . Take care 

Thanks very much for your reply. It is nice to know that there is someone out there willing to listen to how I feel. Hope everyone on here will get the outcome they wish for. Best wishes to all and I hope I can get an answer soon to my symptoms as I have been suffering for months with this and no-one seems to be interested in my pains. Much love x

Hi bazl

Sorry to hear you are suffering. I have just completed number 21 a week ago and I am still getting up  two or three times a night but it's not that bad. I usually settle back to normal in about three weeks. We are all different but please try and keep going as bcg is very effective and the fact you have symptoms means it's probably working. As a light note you may or may not know that the dose in each vial is different due to the clumping nature of the bacteria which means your next dose may not produce the same symptoms. 

Good luck on your journey 

Hi baz,

Welcome to this friendly forum.

Sorry to hear that you're having issues with your BCG course.

I was due to have 27 but around 16,17,18 I experienced something similar to what you're going through.

The BCG caused inflammation in my bladder, I'm aware that's how the BCG works but my inflammation was quite bad.

I also like you struggled with sleeping as I was up quite a bit during night and the sleep deprivation really does get to you. I'm lucky that I work from home, so could continue working, at least.

My biopsy 6 Months after my 18th BCG still showed bad inflammation still, so I didn't carry on and stopped at 18.

I was also put on medication to help with the urgency, but it didn't help or work.

I didn't have pain in the anus.

I was tested for UTIs a few times also 

I carried on drinking lot's of water to keep the bladder flushed and had paracetamol. I know it means peeing more but diluted wee seemed to hurt less.

I even purchased a pee pot for the car just in case I got caught short whilst out. Although I did put off going out if possible. I did manage to go to a concert, but was worried about finding a loo etc...strange how these things play on your mind...

I just think it's a time thing, it eventually got better. It's now been 16 months since my last BCG and I'm sleeping through the night and very rarely have pain now.

I don't think I've offered much advice on how to alleviate the symptoms, but you're not alone.

After 15 you will have a six month break, so hopefully things will improve for you soonest.

Trevor 

thank you for your reply. It gives me some motivation to carry on after reading your message! Well done for reaching number 21! If i could control the pain and frequent toilet trips, i would feel much better. Going to contact GP tomorrow because I think I may have an inflammed prostate hence the pain in my penis as well as the anus area. Dont think I have got an overactive bladder as the consultant said but as you rightly say "everybodys body is different so not everyone are going to have the same symptoms.I have had 3 UTI to date and due to restart number 16 in August. Good luck on your journey and many thanks for your reply.

Hi Trevor

Thank you so much for your reply. Your experiences of BCG resonate with me totally. I dont go out much from home now due to being scared of being caught short ( i keep a bottle in the car). I was getting up every 15-20 minutes every night up to early morning for a wee which is still very painful so by following day I am shattered. Still not getting a good nights sleep. I did a google and think I may have prostatis (inflammed prostate) causing frequent weeing but I will let the gp be the judge of that. Good luck with your treatment and thanks for sharing your experience, it means a lot to me.

Hi BazL, 

I am very sorry to hear of the pain and lack of sleep. It could be pelvic floor related. I had similar with the cather kept for a week after surgery. Currently undergoing BCG. The CNS i see mentioned damage the all the plumbing due to catheters put in and out. I have been making alot of dietary changes to help with the side effects and stopping drinking liquid 2 hours before sleep with partial success.

Wishing you well. 

exactly same here but partial success. Like you rightly said they have knackered my pipeworks by shoving pipes and cameras up there and im only halfway through my BCG treatment! Take care.

Hi BazL, welcome to the group, I just recently had to stop the BCG after #18…my personal story was I couldn’t sleep due to penis, scrotum pain…I was up and down to the toilet at least 10-12 times a night…the days weren’t much better either..

after a month of antibiotics and six weeks of a prostate tablet( don’t know what it is) I’m almost back to normal, I can go about my day with no trouble at all…had a flexi last week and got the all clear…I was due to have 21 so getting to 18 was a good go…

bladder is still inflamed but not bothering me at all…

Nigel 

Hi Rob R

Thanks for your reply. Thanks for sharing your experience, im hoping if the gp prescribes me prostate tablets it might make a difference for me and help ease the pain, ill let them be the judge of that. In the meantime ive been suffering this way since the end of last year and still no better, in fact the pains have got worser that im having to book a visit to see the gp. Good luck with the treatment, hope all goes well.