Great to read some new posts on here.

Just got back from my first post tumour op Cystoscopy. Had the 6B CG, I was flying until 5, when my prostate started a wee bit of bleeding  I had the Covid vaccine the next day and it went downhill from there. UTI, flu, blocked cynuses, ached, tiredeness and pain. Not sure which was which to blame, more the bcg I think.

I kept no.6 down with hopping around for the last 10 mins a bit.

Cystooscopy showed inflamed bit, which I reckon is where the cut was. This I can feel if I sit in a certain position, drink more than a bit of booze, or have sex! All the fun goes in this game. lol.. 

So nervous wait now for biopsy result. Did not expect this to happen just 3 months post op, Use ibpropofen to help, which it does. The odd thing is, if I move around, even for long walks etc, I am fine, no pain for hours. Shame I have a desk job!

Of course in this process, the next thing is more treatments. The good thing is there are plenty of survival stories on here, which gives me faith,

I'm up to 15 BCG treatments now and apparently clear of the early stage agressive cancer.

The only problem is the soreness whilst peeing and the almost continual urge to pee whenever I move - at least every hour throughout the night and more often during the day

My last treatment was by far the worst yet regarding these after effects and they are not reducing with time so I'm not sure if I could cope with any further BCG. I have a rigid cystoscopy booked in three months time and, fingers crossed, no more BCG planned.

Having read through the previous posts at least I find I'm not the only one with these problems, however, there also appear to be very few happy outcomes so I'm not very confident that things will improve. Only time will tell. Gloom !

Reading previous posts I've noticed a few comments regarding the use of Bicarbonate of Soda or womens cystitis pills helping to mitigate the pain of peeing. Anybody have experience of these treatments ?

Hi All, 

Seems posts have dried up a little. 

I am on 4th of first 6th session and experiencing a lot of symptoms and side effects described. 

I took the option of having a permanent catheter during these 6 sessions, as didn't want the prolonged sphincter and urethra damage of constant in and out with the application catheter. 

So i have a 500ml urine bag during the day and a 2ltr bag on a cage at nights.

I find i can drive ok but occasionally have to do an emergency wee stop to empty the bag.

One problem I'm getting now is a white/yellow discharge through the urethra even with the catheter on. It stings profusely and looks like pus. Has anyone else experienced this?

I do take 30/500mg Codeine/paracetamol to help with the side effects but need lactulose to combat the constipation. 

Of course i don't drive when taking codeine as usually only use it at night or the day of treatment. 

I feel so much empathy for you all and your symptoms,  as like most of you, i thought i was the 1 in a 1000 side effector lol.

But looks like that should read 999 in 1000 as only one person has reported no side effects. 

I'm not sure i could cope with the 3 year BCG package and will request removal of the bladder if symptoms do, as seen, get cumulative. 

Thankyou all for providing input and i wish you all the very best outcome and a pain free future.

Regards Lloyd 

Good news !

It is now six months after my final BCG and things are settling down at last. I  now pee a lot less frequently and with little discomfort. The improvements have been very slow, but very welcome.

On top of that, a flexible cystoscopy a couple of weeks ago has given me the all clear - at least until the next check.

I have had 6 BCG intravesical for Ta Hi Grade 3 TCC non muscular invasive Bladder Cancer. 
 

After the 4 th Treatment, the bladder started to bleed with clots ( mild ). Three weeks after the treatment ended the bladder continues to bleed with clots. 
 

I am due to have a Cyscoscopy soon, to check what's happening ...

Has anyone else experienced this ? The nurses have said clots and debris are quite common 

Hello everyone, I am so pleased to find this site and identify with people's problems with the BCG treatment. It's clear we all have one thing in common coping with the pain. I myself was diagnosed in June 2020 and have up until now 14 rounds of BCG. The first 6 were fine and so were the following 3, last December. My hassle started after the further 3 in March this year. I suffered 4 months of uncomfortableness and pain on and off, then almost overnight it disappeared. I had August and upto mid September almost back to normality, that was until my next treatment. The nurses decided just to give me just 2 half doses. After around 3 weeks the pain began. It comes in pulses and every morning is the same, I have to got through a pain barrier before easing off, usually mid-morning after glasses of water. I am due another cystoscopy next week.

I find it quite debilitating, hard to make any plans simply because you really don't know how you going to feel. Anyway, thank you for listening, Chris.

Hi ChrisSC, Sorry to hear how you are suffering. I can identify with the pain. My situation was very similar to yours in the number of rounds of BCG before the pain really set in. They stopped my treatment around 2 yrs ago. The Urologist I was seeing was happy to stop after my cystoscopy showed all clear but I know they like one to continue the full course if possible. Unfortunately this is more common than we are led to believe. Without putting a damper on the situation, I still (almost 3 years later) suffer with cystitus type pain of varying degress every day. Some days worse than others. I am a unique case and this won't necessarily be the situation for you or anyone else. I changed my diet drastically and watch what I eat and drink. I have always been healthy, fit and not overweight but I have found that eating better - mostly plant based with meat once a week, cutting out processed food, no caffine (mostly herbal teas and loads of water), exercise, destressing, and rest, and taking vitamin suppliments, I have improved my general health. So far I have had the all clear with my next Cystoscopy in early Feb 2022! 

I also identify with the inability to make plans and how it affects ones mental heath, but I have found it so important to stay possitive and live in a thankful frame of mind and not let my situation get the better of me. But saying all this, I know it's not easy but stay strong and hope your cystoscopy shows a positive result. God bless, Capey.

Hello Capey, thank you for your reply. In a way it's comforting to know that you are not alone in this situation. I feel as though unless you make the effort it is far too easy to give in to it all and sit in a chair with copious glasses of water watching the TV. I too have bad days and better days you just don't know which ones are which. For example we met friends for a coffee this morning and I found sitting more uncomfortable than standing and walking which isn't always the case. I feel for my wife because it also inhibits her lifestyle I don't want to be forever the grump.

Yes so far all my cystoscopy's have been clear which is always a relief. Assuming my next one is they will review my forward treatment which is due back end of March.  At least on this forum you can identify with people going through the same difficulties, people around you don't always appreciate the enthusiasm of seeking out the nearest loo.

Thanks again, do keep in touch.

Hello guys, good to see we are still battling on.

Well it's  been while since I posted,  i am now 4 and a half years post my op to remove an aggressive tumour  which had fortunately not spread beyond the bladder. 

I was horrified to learn that I had bladder cancer, as my mother had exactly the same diagnosis 21 years earlier, my mother sadly succumbed after 4 years of treatment.

Now I had the same specialist, I reminded him of my mother, adding that the treatment must have changed and was better than 21 years ago!! He told me that the treatment  was exactly  the same, however they were now much better organised.  I was surprised  by that, but I also saw a man that despite being totally dedicated to his skill base  who was getting  tired. He has since retired and my best wishes go with him.

Post the removal of the tumour I had one dose of chemo, and shortly after I was started on the BCG treatments, I managed 17 I think and , discussions with my team led to that being the last treatment  , for those of you who have not read my past posts  , I would just say that it was a very painful and stressful time.

So other than that  , I would say that that I had many side effects, the spasms got do bad that I ended up with diverticulum of, both the bladder , and the bowel , in retrospect I endured the BCG  for too long , my team suggested that 12 treatments is about the norm.

Apart from that I had to have a TURP and a bladder neck easement  surgery,  so these things are possible in your journey,  so talk to your team , don't  try to be a hero, when you already are a hero.

I am due another cytoscopy next May.

My best wishes go out to you guys , you have this darned virus interfering with your treatment  schedules, but stay on top of it ,at the end of the day, the person with your best interests at heart is you, I have been missed for treatments that should have been scheduled  , but were not , your best ally is your BCG nurse/ team.

All the best James

Hello everyone, I've been taking notice all of your posts and it does make for painful reading.

I had my cystoscopy yesterday and as expected it turned into a painful experience. Thankfully there was no recurrence of anything malicious but they discovered my bladder was inflamed. I of course was already aware of that and enquired if anything can be done to overcome it. The doctor referred me over to the urology nurse who carried out my BCG treatment. She said that come the new year she will contact me and see how I'm doing and if there is no improvement will look at instilling a drug that hopefully will repair the bladder lining. It's a long haul done over 8 weeks but if it improves my lifestyle I'm willing to go with it. She also recommended using the cistitis medicine that many of you have already tried so I'll also try that. The nurse has also brought my BCG treatment to an end.

With Christmas upon us I will raise a glass, of water of course, and pray you have a painless few days and going into another year hope everybody's issues. improve.

ChrisSC