Bladder pain

Hello mbp1963, yes like you my immune system reacted very strongly to the BCG and continues to do so. The cystitis plagues me daily and has done for months. I cling to the hope it will eventually vanish as it affects my daily life. I know we all have different tolerances and mine weren't so great.

My GP told me to try and carry on and not let it rule your life which is a bit difficult when you have pain and discomfort through the day. She prescribed cocodamol but to be honest I'm loathe to get used to that so I try and save it for times I really do need it. My last scope did reveal that the inflammation had improved and was only on one wall of the bladder but it sure doesn't feel at times like it's improved much to me. I do hope your condition gets better over time and do keep us informed of how you progress. Take care.

Hi Jacaranda07 ,

After 2 weeks of discomfort,  frequent and painful trips to the toilet  today I finally started seeing some improvement.  Very little,  but it seems I can hold it a bit more before having to run for a toilet and last night I "only" woke up 5 times... instead of 9 or 10 I was getting used to... early days, hopefully it will keep gettbetter. I also hated rugs of any kind. I only take the ibuprofen +paracetamol when I am going out. Otherwise I drink as much as I can. I dread to think what's going to happen next BCG cycle! Thank God it is in about 6 months time. Are you due more BCG? 

I was reading an interesting article on complications from bcg https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4630183/

I will talk to my doctor...maybe they can suggest some of the medications mentioned there...

Hello mpb1963, yes thanks for the link. I have read it in the past but now I have read it again. Like a lot of these medical papers your mind can convince you that you have the symptoms mentioned in some of the cases. I personally don't suffer too much with frequency, although I do have my moments as like you I drink a lot of water. My amitriptyline has started to sometimes make it difficult to pee particularly at night. This happened previously when I took it and made me come off it. I have been on it for 3 weeks but it takes 4-6 weeks to have any effect on the pain side of things so will stick with it for now.

No I'm off BCG, from what I've read a good majority of patients do an average of 15 instillations. I hope your symptoms continue to improve. Let us know how you go, it helps us all who suffer this way.

Take care

Hi Jacaranda07,

My symptoms are getting better,  but very very slowly... do you or anyone here has any idea of how long the superfrequent trips to the toilet last? It's now been nearly 3 weeks since I have started having them. Today I decided I am going to see my daughter and drive into London despite my "status". Obviously and rather embarrassingly,  I will wear adult diapers,  which I can do but would like to understand if this is now going to be the norm from now on... 

Also,  I spoke about this with my urologist and he thinks I'd better stop the  BCG. He says that most benefits from the BCG treatment are in the first year. The second and third only give marginal benefits... so this is I suppose a good news for those who cannot carry on past the first 15 installations.

Hope your symptoms also will get better!

Marco

Hello mpb1963, there's no shame in wearing adult pads, needs must. I remember carrying a bottle in the car in case I got caught out driving to hospital appointments and that was only 20 minutes away. It does get in your mind too and can make you anxious. I think everything is done in baby steps. Strangely enough last night I only had to get up twice which is a record for me, it's usually 3-4 times. Frequency does tend to settle down, that's not such a problem for me now, although I do have my moments. Drinking so much water has to come out and at times I can have a period in the afternoon whereby I'm up and down like a yo-yo. I just need for my discomfort to settle down. 

Enjoy your visit today. Take care.

Thanks Jacaranda07. I had a really wonderful day.. the drive was dreadful. Appalling weather and a nightmarish traffic... but well worth. I managed to hold it for the duration of the trip both ways, 1hr.15 going and 2hts15 back. The diapers probably made me more confident and relaxed, which helped a lot. Hopefully this night I will sleep more and with less interruptions. I have found that ibuprofen helps. I think I am starting to suffer from sleep deprivation ...

All the best

And do the doctors care or even think of the partner's sleep deprivation? Not on your nelly! Very short-sighted as sleep deprivation is well known to increase likelihood of all sorts of ills...

Glad you made it all okay. I didn't say that I never did need to use the bottle just there for peace of mind, same as your pads. Driving these days can be hard work but good to see family. I hope you sleep better tonight, I have had plenty of disruptive nights and even now not guaranteed anything. As Denby alluded to I'm constantly aware of not disturbing the other half which is an art in itself. Keep us posted on how you progress. Take care.

Indeed!! Monica luckily does not wake up when I have to go... and I do as quietly as possible. I would really feel guilty if I caused Monica to lose her sleep... unfortunately it seems from what I read that there is little to do to cure the BCG cystitis.

I'm clinging to the fact that what I'm told by the medical staff that it will eventually go on its own accord. Before my last 2 BCG instillations in Sept 21 I did have a period of cystitis with its frequency and discomfort and it did literally disappear almost over night. I had six weeks of normality then the last two half doses threw me back into it and I have had it at varying degrees ever since. It's interesting to hear how others cope with it all and hear tips and advice on what they do to cope. Of course I'm grateful that it's kept the cancer away but it has an impact on quality of life. I find it difficult to get that fact over to the docs and nurses.