Long term effect of BCG treatment

Hello tommyboy, just wondered how you were progressing. I'm having painful episodes, will ring my nurse today to try and get some advice.

Hi Jacaranda, been doing some of my own research as I too am still suffering. 

This may be of interest if you are talking to your med team.  Have passed it to mine at the Marsden and waiting for a response!

www.health.harvard.edu/.../treating-interstitial-cystitis

Thanks for that. Funnily enough we did discuss Elmiron a drug that is listed on the list you provided, which may well be a step forward. Also on there is Amiltryptiline, I have had that in the past for peripheral neuropathy, which incidentally I still suffer from. I will suggest that because that could be a double whammy for treatment for both. What concerns me is it is us that have to come up with some solutions, I'd like to think that they should lead the way in suggestions. Let me know if you do get a response, I'll also let you know what the oncology nurse advises me.

Thank you

Hi LoopyLouLou,That’s interesting.I had Interstitial cystitis for 34 years before bladder cancer.I was supposed to have bladder instillations to help but the hospital changed their mind as I kept getting urine infections.The only medication I took was Cimetidine for bladder ulcers.This used to be a treatment to help stomach ulcers.It really helped the pain in my bladder but I developed serious liver problems and had to come off them.Cutting out onions,tomatoes and anything citric helped as well.I had my bladder removed due to cancer but they said it would have been removed at some stage anyway as it was so diseased.Love Jane x

Hello Jane thank you for sharing your experiences. Can I ask when you suffered from your cystitis did it always cause you pain when you passed urine? Mine doesn't always its more in the early morning. I used to get "take your breath away" painful spasms. Thankfully since I had the Ialuril instillations they have dissipated. However I do still have some painful episodes that can last a few seconds at a time. They can be very hit and miss and therein lies the problem because the bladder seems to have a mind of its own. Job to plan anything, I don't want it to take over my life but it's making a good job of it at the moment. It also disturbs my sleep and in turn disturbs my wife's too. Find it quite debilitating. Anyway enough about me, thank you for listening.

Take care, Chris

Hi Chris.It varied.Sometimes it was very painful to pass urine but I found the pain worse when the bladder was filling up.I first had symptoms in my early 20’s mainly frequency,urgency and pain.The first cystoscopy showed a large ulcerated patch in the bladder.Nothing was done about this though and I kept having symptoms.Finally in 1997 I saw a urologist who took the symptoms seriously.He sent me for various tests on my kidneys they all came back clear.He then suggested another cystoscopy.When I came around from the anaesthetic he came to talk to me.He was angry his first words being ‘do you want the bad news or the bad news’.I said ‘I’ll have the bad news ‘ and he said ‘how the hell has your bladder been allowed to get into such a state ‘ He then proceeded to tell me that the entire bladder was acutely inflamed and that I would have to come back for treatment.A few weeks later I had a TURBT and biopsies and was diagnosed with Interstitial cystitis.I’d never heard of it before.I had diathermy to remove red patches.The following years the symptoms remained much the same pain,frequency which made going out difficult as I was always looking for a loo.Likewise with the urgency.At the start my urine was free from infection but as time went on the damage to the bladder caused repeated infections.The irritation caused by the infections caused pre cancerous changes found in 2005.I was under cancer surveillance for 14 years with regular cystoscopies and cytology tests.At the beginning of 2019 I started feeling unwell with fatigue and weight loss.The urinary symptoms felt different.I couldn’t pass urine for hours or I was going every few minutes.I contacted my urologist and after a TURBT was diagnosed with Squamous Cell bladder cancer.I had my bladder removed in Sept 2019 and I don’t miss it at all.My life is much better with a stoma.I completely understand how debilitating it is.Lack of sleep is miserable.I do hope your symptoms settle down over time.Dietary changes can help an irritated bladder.Best wishes Jane x

Hello Jane, that is quite a story thanks for sharing it. I did have an inflamed bladder last year which surprisingly enough did clear on its own. But subsequent BCG started it up again and I've been suffering for the last 6 months. The powers to be keep reassuring me it will go so I cling on to that premise. I do find this forum very helpful with people's experiences. Thanks again for your response, Chris

Yes, I am somewhat frustrated that I am the one investigating and researching and making suggestions.  My husband came up with this info as he is on amytriptelyne for chronic back pain, which he also researched and requested after GP, pain management clinic and surgery failed to help! 

I have a big family wedding coming up in a few weeks and frankly am now not looking forward to it as much as I should.  Travelling when I need the loo every 20 mins will be no fun and excruciating pain when peeing is just so debilitating.  I don't sleep either so am exhausted most days.  I'm thoroughly peed off!!!

Still no response from my team.  I shall be sending another email today.  

As if cancer wasn't enough of a cross to bear  

Hi Chris,I have a cousin who has Interstitial cystitis.We both have other auto immune problems.As I had recurrent Pericarditis the cardiologist and the urologist suggested I had tests for SLE ( Lupus) but these came back negative.If I had a pound for every doctor that has remarked on my ‘interesting medical history’ I’d be rich.I’ll keep my fingers crossed for your bladder improvement.Jane x

I know how you feel. Events you're supposed to enjoy become a chore. Ironically enough we were due to have one of our friends over for lunch today but had to cancel. The lady in question is terminally ill, quite frankly she puts me to shame, I do not know where she gets her drive and energy from. Felt bad about letting her down but we will make it up to her. 

Regarding the response from the medical teams to onward treatments, I felt I had to drive them on to give me the Ialuril instillations, it's as though they have been advised not to give out drugs due to costs, if you don't ask you don't get.