Long term effect of BCG treatment

Hello Jane thank you for your good wishes. It's amazing how you can get out of one medical problem and straight into another. Sounds like you have had your fair share of problems. I have always been in print and before I retired was a proof reader, we used to typeset and produce matter to go to print. We did a heck of a lot of medical books, I used to wonder then how I've got this far without getting some of these illnesses. Not a job for a hypochondriac. Take care Chris.

Hi Chris,My mum who died recently was a proof reader.She had always held an ambition to work for a newspaper and landed the proof reading job in her 60’s.When the paper made the proof readers redundant mum went freelance.I’m currently sorting out all her books.There are so many on the English language and grammar.Jane x

Haven't posted lately but keeping with the blog. I mentioned I was prescribed with three medications to "trial" by my urorologist non of them helped. I have a further appointment with him Friday for "plan B" as he put it. 

My GP took me off Finastride and Tamsulosin and has given me another drug combining the two "COMBODART" for a trial period. I now firmly believe there is no dedicated drug to cure us and the trials I am undergoing seem tosuggest it may be possible by trial and error to find something that helps.

I had a cystoscopy last Wednesday with no change. The a not normally painful but this one was extremely so.

Consequently nothing has changed, sleep deprivation and pain continues, some reasonable days and some awful.

I ask loads of questions particularly getting some sort of support, but never a satisfactory answer.

Is anyone being treated at Broomfield Hospital Chelmsford? I spoke to my oncology nurse some weeks ago suggesting my name be forwarded to any patients suffering with this problem and form a chat group of local people but heard nothing.

Jacaranda07.

Thanks for your enquiry some time ago muchly appreciated but no change.

Thanks for reading and good luck to all on this blog it is so nice to hear all the comments and know we are not suffering alone.

Hello yewdee, welcome back. Sorry to hear about your plight, I hope the new drug will help. I too am suffering much the same way. Last night I actually had a decent sleep but the previous 2 nights I was up with a continuous burning sensation. There is no rhyme or reason for its timing. I practically talked the urology nurse into prescribing some Amitriptyline to try and get relief from some of the symptoms. I have no idea if it will work because you have to take some of these drugs for weeks to find out.

I am not at Broomhill but Darent Valley Hospital near Dartford. I have a cystoscopy on Thursday week which I'm almost dreading because I know it's going to be a painful experience (it could be painful just to get there). It really puts a blight on anything you want to do, everything becomes an effort. 

Do keep in contact as it's helpful to trade experiences, sometimes feel a tad abandoned by the medics.

Take care, Chris

Hello all, I spoke to one of the urology nurses at the clinic today regarding the dosage of Amitriptyline. I have been on a dosage of 10mg daily, after a week and a further consultation upped it to 20mg for another week. However I have found it sometimes makes it difficult to pee (which is a known side effect). She told me to go back to 10mg as it can make it very painful to hold. She is convinced it is the chemical cystitis that makes it so. I am due for a cystoscopy next Thursday and will obviously confirm that is the case (I think I might know that already). So long as there is nothing unwanted in there.

She also said try not to pee and hold it a bit longer which is difficult to do when it hurts and when I drink so much water, bit of a catch 22. I get that the bladder has to be retrained into holding more but as far as I'm aware BCG shrinks the capacity anyway. It would be so nice to lose the discomfort, time is the great healer. Take care, Chris 

Hello all.

Haven't posted lately but to update I have a tried a number of drugs for varying periods but non have done anything to improve my condition. Urology consultant referred me back to my GP with suggestions to try various drugs also recommended an abdominal scan which I had last Thursday and am awaiting the result. I am now on Amitripyline 10mg. for a monthly trial, with the option to up that dose to 20mg much the same as you Chris. I am finding I sleep better (it's a powerful drug and seems to knock me out) but to date no effect on the systitis. I have had the problem of not being able to pee throughout my drug trials but have found as you suggested walking for a while helps release the "blockage". It does seem to me you just have to find the best way to manage it but very difficult at times. I'm told time will help but how long, who knows? Perhaps the next trial will do the job!

Best wishes to everyone and please let us know if you have any tips that may help.

Hello Yewdee, welcome back. Sorry to hear you haven't found the answer to your problems. Mine too carry on much the same. I do have bad days and better days, if I have to go anywhere for appointments or seeing friends I really become anxious (which probably adds to the problem) about how much pain or discomfort I may be in. I had a half decent day yesterday but even now through this morning I have had painful bladder spasms.

I'm in a total dilemma about amitryptiline, I take a very low dose but it seems to enhance the urinary retention causing pain until it's released. On the plus side it seems to cut back on frequency, all a bit chicken and egg. I did see a urology doctor who seemed hell bent on prescribing drugs that relaxed the bladder so I didn't wee so much but that does nothing for the pain. He prescribed Mirabegron which I ended up not taking because I feel it will hinder rather than help. Maybe it's the wrong route and should really see a pain management specialist.

Like you I'm fed up with my condition and the clinic seems totally helpless in what I'm going through. It's as though you are the only person facing the problem. Some relief would be very welcome so it's good to keep in contact with people such as you who unfortunately understand the situation. Let us know how the amitryptiline goes.

Take care, Chris

Chris, you are not alone. The problems you are experiencing are exactly as mine. I have been taking amitryptiline nine days so far and am certainly experiencing more bladder spasms particlarly during evening/night but still peeing as frequently. I have 28 days of amit. then see my GP again but do have longer periods of sleep but unfortunately wake up in spasm and have to walk for a time. Will certainly keep in touch with any further updates.

Thanks and Best Wishes

Richard

Hav'nt posted recently but over that time have "tried" a number of drugs unfortunately without success.

Had another appointment with my Dr. last monday for a further discussion and he precribed another drug which he said might help control the pain of the cystitis. Although it hasn't stopped the pain completely it has made it much more bearable, it's only four days down the line but has certainly helped me, have slept muh better also.

The controlled drug is a powerful pain killer called TRAMADOL and wondered if any of the group has been prescribed it at any tie and/or have found benefit from it. I would dearly like to know.

Jacaranda do hope you have found something that is helping, It,s just over the year now for me but the last few days have been much better

I didn,t find AMITRYPTILINE suitable and came off that recently. 

Wishing you all the best and hope you also have had some success

Richard

I really hope it helps.My partner John takes it for the pain from ulcerative colitis and a rare inherited muscle disease.He finds it helpful.Best wishes Jane