Excruciating pain after BCG Treatment

Thankyou for that Leo,l’m so sorry that you’ve had to go through that.

When you feel like it would you share your experience of losing your bladder and how you managed to cope and adjust to ‘normal’ life without it? If you don’t want too share the experience with me of course that is fine, but losing my bladder through this difficult period of my life is something l think about often.

Anyway Lea thanks again for sharing your experience with us although it must have been hard to do?

Take care my friend, and good luck for the future.

Regards…Don.

Sometimes you really need to stand your ground with the hospital when it comes to pain medication.  They really underplay the severe pain by dismissing someone saying just drink water and take paracetamol. While you are under the hospital care the hospital should provide you with take home medication which allows you the time to arrange an appointment with your doctor for them to provide further medication. I am on Co-Codamol which is more effective than playing paracetamol but not great. I am also prescribed legal medical cannabis which also helps with the pain and assists in catching a little sleep in between peeing every 45 minutes through the night. There are various companies that can provide legal medical cannabis in the UK, I use one called curaleaf 

Thanks for that GregR,an interesting post.

My doctor,after me running around like a headless chicken has put me on a course of Cocodamol, things have slightly improved but l’m not sure if it is the Cocodamol or not as l’ve only been on them 2 days. My doctor told me if they don’t work she would try me on Oromorph. Let’s wait and see?

But you were so right when you said that hospital staff underplay the severe pain this BCG causes at times. 10 weeks l’ve been telling them about this and all l’ve had from them is drink plenty of water and paracetamol despite telling them it was not working.Grrrrrr!

Anyway take care and l hope all goes well for you?

Regards…Don.

Hi Don 

I have only just discovered this forum, I have only had 12 doses of BCG but everything I have read on here strikes true. I have stopped all tea and coffee, fruit juices, and acidic or citrus fruits. I have one chamomile tea in the morning and peppermint tea in the afternoon, other than that just water. It seems to have helped with the pain, but I am careful to limit my fluid intake a bit as the frequency and urgency is so life limiting - needing the loo so often makes going out and any travelling so difficult. It’s 5 weeks since my last dose and I’m still up 6 times in the night.

i don’t think I’ll ever get to 27 doses, you have done well. My understanding was that if the cystoscopy shows no regrowth you could be put on surveillance … my cystoscopy is in October and my next BCG dose due in January. At the moment I’m recovering from tthe July dose and wondering if it’s practical even to go on holiday. 

Hi Mathilda 438212, thankyou so much for your reply.

So sorry you’ve had to endure the BCG Treatment, it certainly isn’t nice at all.

Re- holidays : l’ve not had any for two years because of different appointments, flexible cystoscopes and rigid cystoscopes. I may as well stay at home and get up 10 times a night as opposed to paying a hotel where l’d be doing the same thing. Also daily routines have to be governed by where the nearest public toilet is(that’s if you can find one) so they were deciding factors as to why holidays,as much as l need one would be a waste of time and money at the moment.

But we are all different and you can only make your decision re- holidays by weighing up your own personal circumstances.

l am on my 2nd round of BCG totaling 15 from the first round and 9 from the second round, l should have 6 more to do but l have to see a consultant next week and l doubt if l could bear anymore, but we’ll wait and see what he has to say.

Re- drinking : l drink Lemon Barley Water, Cranberry juice recommended by the hospital, no caffeine tea. I can’t honestly say that any of them help, but they certainly don’t do me any harm as l’ve stopped and started them all at different times throughout my 2 year treatment program with no ill effect.

Again thanks for sharing your story,we all are never too old to learn. I’ll be back on Tuesday to share what the consultant has said.

Good luck for the future,take care.

Regards …Don.

Does any like me. Put on weight  bloated upper body  and  since 2023 really sensitive to the sun..

I also organise any time I leave the house by accessibility to toilet facilities. I’ve got myself a RADAR key which I’ve had to make use of a couple of times. I also wear incontinance pads due to the ‘drip’ I’ve developed since starting treatment (although the drip is worse during and immediately after the BGC treatments).

I’ve recently purchased a product called ‘travel John’ which is a small portable unisex urinal device which I’m hoping will give me peace of mind when out and about (as a last chance saloon). It might be worthwhile for some of my fellow BCG endurers to consider.

i use a company called incochoice.co.uk for these products. 

Hi Greg thanks for that. McMillan cancer will also give you a card to carry that explains your need for urgent toilet facilities if you require them, so it gives you access to non public toilets etc for instance shops and the like. I’ve used it twice and was surprised just how understanding the shop owners were.

Thanks for the incochoice.co.uk……l’ll take a look. I carry a male urine bottle in my car, but in two years have not had the need to use it.

l didn’t take to the incontenance pads but l’ve rigged myself out with serval pair of incontenace underpants, super absorbent up to 300mls of urine without showing, and you can throw then in the washer like ordinary Y-fronts and use them time after time, quite expensive l thought initially but the more you use them the cheaper they work out per item,l wouldn’t be without them. They are extremely comfortable.

Thanks again for taking the time to reply Greg, take care.

Regards…Don.

Hello Don - So sorry to hear about your sufferings.  We are in the US.  My husband had his final BCG treatment on December 13 and all a few days later things went downhill fast.  Urinary frequency, urgency, spasms, pain radiating through the pelvis.  We were told the typical drink water and so on.  They did multiple tests for UTI infections, but DR found nothing.  He suffered like this for 5 weeks and was finally diagnosed with BCG induced cystitis by symptoms alone.  The reason the tests showed no bacteria was because the BCG (m bovis) bacteria is very hard to detect and requires specialized microbiological testing.  Even then it may only have a success rate of 30%.  I would encourage you to research BCG induced cystitis.  My husband is being treated for it by an infectious disease Dr and is now recovering.  However, his treatment protocol will take a total of 9 months.  We are on month 3.