Hello Jon,

Interestingly your experience is almost exactly the same as mine. I have recently had my 15th dose of BCG on 30 December & the side effects are virually the same as yours & very uncomfortable indeed.

My urology CNS confirmed that the effects of BCG are cumulative and therefore can get worse for some patients whilst others seem able to sail through the full course with little problem.

It is now 4 weeks since my last infusion & the effects have been driving me crazy & not been able to get a full nights sleep for many weeks due to frequency needs followed by the horrible burning / stinging sensation and pain in the perineum region, which also means it is difficult to find a comfortable way of sitting down & walking around town or other activities like gardening etc., quickly become very uncomfortable due to a stinging sensation at tip of penis which seems very sensitive.

At the end of the previous 3 instillations it took almost 6 weeks before the effects wore off.

I am due another 3 doses at end of June which will be preceed by another cystocopy & a CT scan has also been requested.

I think most patients manage the full 3 years of maintenance treatment without too much proble, but unfortunately some of us get these nasty effects which can be difficult to deal with & curtail a lot of normal daily activities.

However, if the treatment ultimately works & the cancer is defeated that will be great & probably worth it all.

Incidenatlly, what is the brand name of that womens cystitis relief your tried & found helpful - I perhaps ought to try it.

Best wishes & good luck.

The picture attached shows that with your Urology team urine in good hands!

Iain[[]]

Hello, im sorry that you had such a bad time , some people can sail through this with just fairly minor symptoms, unfortunately, this is not the usual case, as i mentioned previously .

i can only speak from my own experience , which i think was/ is fairly comprehensive, it falls into several categories really.

i'm assuming that you have had 9 lots of BCG now , as i mentioned in my previous statemnts that i personally found the procedures to be be worsening as the procedures progressed, as the side effects are cumulative, i found that the dynamics of procedure to be different st different times and with different people, for instance, the sphincter to my my bladder has tightened, making the opening to urinate through tight, and to expel requires more effort, thus more pain , you could mention this to your specialist , i went all the way through mine before, they , now decided to operate to ease the sphincter, another side effect of this is that due to the involuntary force of urination a diverticulum (hernia) has occured in the bladder creating more difficulties.

the cameras in the bladder fall into 2 categories rigid where you are in theatre and sedated and  flexible 

the flexi is fairly straightforward, it is passed into the bladder and sterile solution is pumped into the bladder, you are awake for this procedure , i found the first few to be ok but as the bladder has more doses of BCG and cameras they do get uncomfortable.

you did not leave your name , but if you need any other specifics answering please don't hesitate to ask.

regards James

Hi Iain and James

Thanks for your replys. Iain I used both Waitrose and Tesco's branded Womans Cystitis Relief if that helps, they are all basically the same and are Sodium Citrate. They come as a sachet of powder which you mix with a glass of water and drink, usualy cranberry flavour. I found it helps reduce the pain quite a bit, but it dose say on the packet "Not to be used by Men or Children" for some reason. If that worries you, you could try the old, teaspoon of Bicarbonate of Soda in a glass of water trick, to reduce the acidity of your pee. My wife used to use it, now she just nicks my Cystisis Relief, typical.

For what its worth, I am getting slowly better, but it's hard just gritting your teeth and getting on with it. James you seem to be well down the path on this, does it go away completely in the end and we get back to normal in the long term? I, like you and Iain, have this inability to pee like I used to and have a restricted flow now.

Best reagrds

Jon  

Hi James 

Thanks for your reply, I posted a dual reply to both you and James earlier.

Jon

Hello Jon, in answer to your question, at the end of treatment a new journey starts, i found that as time goes by the whole situation does slowly start to normalise, i was surprised as to how long this took, it's another phase of recovery.

here i am, some 6 months after treatment , i find that i only get up once at night now, i still find i get niggly problems, both bladder and bowel, but you contend with these as they arise, but the upshot is i'm thankfully painfree and normalising.

good luck going forward Jon.

Regard james

Thank you James, at least now I know it will eventually subside and go away.Tthe hard part for me has been working and earning a living through this. Luckily I work in the film and TV industry and once on set, either on location or in the studios, a Loo is not far away. I'm still at the stage where I get up anywhere between three and six times a night and I have a much reduced bladder capacity now, with a reduced flow rate. I've still got another year or more of maintainace instilations approximately six to nine depending on the my Consultant, but Ha Ho, I'm one of the lucky ones with a non intrusive tumour and I'll be going onto a different immunothearpy drug in May, instead of BCG. That will be interesting and I'll let everyone here know the outcome of it.

Kind regards

Jon

It's been fascinating reading this thread as I can identify with you all. I have only had 9 rounds of BCG and I have had to be taken off due to the intense pain. My first 6 treatments went okay with mild pain that went after a week or so. But after my next 3 treatments, I have been suffering badly. Since then I have had 2 cystoscopies, one to take some biopsies from all over the bladder and the last one a week ago, to see how the bladder looked. The good news is that I'm cancer-free but the pain has been getting progressively worse. My Urologist has put this down to the BCG and how my bladder has reacted to the treatment. Hence the decision to stop the treatment. The pain is so bad at times that it cripples me. I then have to hobble to the loo as I know that this is the only way to release the pain, which in it'self is extremely painful. As the pain has been going on for several months and showing no signs of easing up, and unfortunately pain killers do nothing for the pain, they have decided to try a 6 week course of Cystistat. This apparently lines the inside of the bladder and helps soothe the pain much like Sudocrem would do to a bad rash on a baby's bum. I'm hoping this will do the trick. If not they will be referring me to a pain specialist. All the best to everyone with the on-going treatments.

Hi Capey

Your not alone mate I know how you feel, I was like that a few weeks ago. The good news is I'm getting better every day now and its a slow proccess and its been nearly three months since my last instilation of BCG. I'm now feeling 80% better if that helps reassure you. On my last Cystosocopy before Christmas my bladder was red and very inflamed and like you it bloody hurt like hell at both ends. I felt like I wanted to pee all the time, it was a constant urge and when I went to the loo, I could only pee a tea spoonfull. I also had that constant urge to want poo as well, in fact I felt constipated and very uncomfortable, making sitting down and driving a very unpleasant experience. 

My consultant tells me its BCG Cystitis and it will go away in time, which as time goes by is quite correct. My Cancer Nurse also told me that BCG can destoy the bladder in some people and insisted that I told her my pain levels every week I went for an instilliation, and if it got to bad, she wouldn't administer it.  

My Consultants is brilliant and just before Christmas, said he was going to take me off BCG, as it was causing me so much pain and he would have a conferance with his collegues, to see which alternative drugs they could administer instead. This they have done and I'm back on again in May, hopefully with this new Immunothearapy Drug it will be a lot less painful. I get the occasional flare up, particularly when I drink coffee and not enough water or drink to much wine.

Well you can't suffer all that pain and discomfort without having at least something to look forward to and  enjoy now and then!!!  As I said to Iain, my Consultant told me to drink at least three litres of water a day to flush your bladder through and if it gets to painful try using Womans Cyctitis Releif from your local supermarket to neutralise the acidity of your urine to reduce the pain. As I said in my previous posts, it does say on the packet "Not to be used by Men" not sure why, but I can tell you it helped me with the pain control, when going for a pee and I only used it a few times when it got unbearable. I'll let you decide whether you use it or not. Keep in touch and I hope this helps a bit with were you are at the moment. 

We are alive and kicking, sod the pain it will go away in time.

Jon

Hi Dickie

Apologies for the late responce, but your post went into my junk box. Strangeley enough I was expecting a letter from my GP telling me I was an "at risk" or "vunerable person", I didnt get one. I'm still awaiting my next round of infusions due now, but I think I will have been put on the back burner due to Covid 19, I have to wait and see. 

Having read the articles about TB and BCG injections being used to fight against Covid 19 I suspect that we are in a really good place, Ive had twelve of them now, so hopefully my immune system is up and fighting.