LauraMini,
He REALLY needs to have an explanation from his treating physician. It is so frustrating to not get answers from the doctors and nursing staff. It is good that the cancer seems to be under control but unfortunate that other bladder issues are not being addressed.
This site does not have doctors or health professionals; it is inhabited by people who are experiencing or supporting those with urological cancer. That said, there are a number of questions to be answered. Perhaps some of the following thoughts can be used to state the current issues and prepare a list of questions for his doctor.
Is the frequency of urination new, or has it been developing over the past three years ?
What was the bladder capacity one year ago ? (currently 300 ml)
Describe the type and location of the pain and when it occurs.
If bladder pain, is it always there, only when the bladder is full, or other?
If penile pain, is it always there, only when urinating, or other ?
What activities seem to cause or make the pain worse ?
Is there visible blood in the urine and does it relate to pain ?
Do regular urine tests show microscopic blood ?
Does he do heavy labor ? I find that both bladder pain and penile pain can be caused by activities that exert, even mildly, the abdominal muscles. Simple tasks can be the source of pain that can last for days.
MY thought on a couple your specific comments.
Three days of bleeding seem a long time to go without a doctor cauterizing the bleeding spots following a TURBT. As for blood and clots two weeks later, as the scabs come off of healing biopsy sites, around two weeks later SOME SMALL amount blood and clots are not unusual. (Based on MY experience - with heavy bleeding and cautery following TURBTS and post TURBT scabs.
My experience with BCG and bladder volume is that bladder volume has decreased. Four months after BCG my bladder capacity returns to about 60 % of what it was prior. My doctor blames chronic inflammation and BCG induced cystitis.
There are medications to relieve urinary pain - in the US called AZO (phenazopyridine), which acts only in the urinary tract. Ask his doctor what drug is available there and how to use it. There are also medications to help with bladder inflammation; ask the doc.
I am not sure how you get medical people to answer questions in OZ. Perhaps you just have to get tough. It always helps to have another person with the patient - someone less involved (and rowdy?) who can DEMAND answers and will not settle for rubbish. One of my favorite approaches is to ask, politely, "If you can't help with this, who can you refer me to who CAN help ?
Below are links to two articles from the medical press. The first describes the extremes of bladder capacity loss. The second is positive for those of us who experience wildly unpleasant side effects from BCG - it posits that heavy inflammation is a good sign.
Bladder Contracture following BCG
deepblue.lib.umich.edu/bitstream/handle/2027.42/31077/0000754.pdf;jsessionid=4C24B769B931E93844BAC7F95F9F65D4?sequence=1
Prognostic value of inflammation after BCG
www.ncbi.nlm.nih.gov/pubmed/24717097
Again, this is not medical advice, it comes from my personal experience going through BC. I hope it helps you focus on presenting YOUR issues to the doctor in well defined terms, and helps you receive specific answers in return.
Best
Jack