Chemical Cystitis

Hi Yewdee,I’m really sorry to hear you are still suffering.Are you still taking the Cranberry ? Although my cystitis wasn’t caused by BCG I had the same symptoms of pain and frequency.The more acidic the urine is the more painful it will be.I was going even more than you when I first got cancer and it is extremely debilitating.No sleep and constantly having to urinate is so miserable I can empathise.Have you tried cutting out acidic foods and drinks ? Aside from drinking plenty of water I found pear juice the most soothing.Best wishes Jane

Hello yewdee, I haven't been on here for awhile. You may remember I too was, and still am, suffering a degree of pain and discomfort from chemical cystitis. I had to have some bladder biopsies right at the end of last July. The nurse on the previous cystoscopy was concerned about some red patches. I was convinced it was inflammation as they were there on previous cystoscopy's. 

I finally saw the surgeon who carried out the biopsies on 28 October. He told me the biopsies were negative, thankfully, and that the discomfort was down to the BCG. As he stated at least it appears to have done what it was supposed to do. He did reassure me that it will eventually go, it just takes a heck of a time.

He told me at the time of the procedure he stretched the bladder and indeed it improved my capacity. I don't have to rush to the loo so much but it can hurt to hang on to it, particularly through the mornings. I used to get really bad painful spasms but they appear to have gone, thank heavens. It can be uncomfortable to walk at times but it can disappear totally by the afternoon. I try not to let it control my life but you are forever conscious that its there in the background waiting to pounce because you have no control over it.

I drink plenty of water and only delve occasionally into the odd beer or glass of wine. It is not so much now about the pressure to pee but overcoming the pangs of pain when they strike. I do not take any painkillers because they just don't appear to work. I do hope your discomfort will dissipate, it does seem to go on forever but I cling to the hope one day I'll wake up to how it used to be.

Take care, Chris 

Hi Chris, it may or may not interest you that 7% of the population have what's called a CYP2D6 genetic liver enzyme anomaly. This affects processing of very many common meds including painkillers, so in most cases they don't work, or don't work much. My OH is one of these, the times I have tried to explain this to doctors and dentists would make me a rich person at £1 a time! BTW this is found in about half of people on the autistic spectrum, can you imagine, poor patient says 'I can still feel the drilling in my tooth' etc and gets totally disbelieved and written off as not knowing what they are talking about 'because after all they are autistic'!

Denby 

Hello Denby, it's one thing paracetamol and the like making very little impact but the thought of anaesthetics used by dentists and hospitals for procedures not working brings tears to my eyes. I can't imagine a cystoscopy without the gel they use to numb the pain.

There are alternatives but they need to know which patients to give them to. My OH can actually tolerate drilling for a filling but we had to go private to find a dentist that believed him! He's not needle phobic at all but finds the dental ones in the mouth very objectionable. Unfortunately his medical history [epilepsy] has meant he's needed quite a lot of dental work.

His issue recently over paracetamol was the hospital depending on it to reduce fever from sepsis, which it didn't. He improved after a few days of the heavy duty IV antibiotics. I believe he wouldn't have got that sick if he hadn't been repeatedly dismissed by an ignorant assistant GP who did not believe that patients and family could be knowledgeable and not just whingeing. Sigh...

General anaesthetics work fine on him. He's never commented on the effectiveness of the gel for cystoscopies. I would share your mental wincing though I've never had to have a cystoscopy.

Denby