Frequent and painful urination

Hi, I`m new here, thanks for having me! My partner is diagnosed with bladder cancer and has been having BCG weekly (since early September this year). This has had to be suspended because for the last few weeks he`s been peeing almost constantly (so much that he can only leave the house for short periods) and whenever he does he has a lot of pain at the end of his penis (just where the pee comes out). His specialist nurse doesn`t really have any ideas about stopping the pain, and I just wondered if anyone here has any suggestions. Thanks.

15 Replies

oldestnewest
  • Arami76 I am sorry to hear that. I felt pretty good after my first 6 week course of BCG. Having just completed a 3 week maintenance course of BCG it was very different to the first time around. This time, I have felt very weak, and tired and cranky, but no pain when urinating. Everyone reacts differently but surely the hospital staff should be able to help you as they deal in this on a daily basis???

  • Hi, my husband found the BCG treatment got more painful with each subsequent dose. Urinating frequently was not so much of an issue. He did manage to stay the course(just). Did not choose to have a repeat course!!

    One lady we knew who was having similar problem with BCG. Went to her GP who put her on a course of antibiotics, which she said helped .

    Hope all goes well in the future

  • Hi there,

    I fully understand what your partner is experiencing. I had similar experience (I am female). My bladder could not tolerate the BCG after a period of time so it was stop and go until the treatment was complete. Each person is different regardless of gender. I developed cystitis (inflammation of the bladder because of the treatment) and most affected was the urethra and it is not unusual for some people to develop it. It is horrible and you constantly live in the restroom. I was going to the bathroom every 5-10 minutes and it hurt no hell... it would feel like someone poured acid in me. It took quite some time before the inflammation went away. It was totally disabling. For a woman my age and I did not think that I would ever wear the adult undergarment (Depends). What was I to do in order to have somewhat of a life. No need to feel embarrassed... it is not forever.

    Yes, there is medication that can be taken.. Pyridium which has to be prescribed. I was in such pain that my doctor prescribed Hydrocodon-Acetaminophene. I was even prescribed Lidocaine 2.5% with Prilocaine 2.5 for the outer genital area as that was affected badly. I cannot begin to tell you how painful it all was. Your partner should have been tested for inflammation or any bacteria in his/her bladder or urethra.

    It sounds like your partner is going to the wrong medical team. You really have to be your own advocate and do a lot of research online and ask questions. I went to the Cancer Treatment Center of America. There are several throughout the United States. They treated me very well and are very attentive with what they call "Mother Care" and other places do not have that kind of care. Check them out. Cancer is no joke no matter the kind you may have. It is your life and your prerogative to know all you can about it. I feel very strongly about educating oneself on the subject matter.

    This what I did for myself. Everyone has to choose their own path. I stayed away from sugar (non whatsoever as I looked at everything I put in my mouth) - juiced every day (greens:- kale, spinach, mixed greens, coconut water and Granny Smith green apple), changed the type of water that I drank (bought alkaline water). Our bodies are acidic and needed I to bring my Ph. level up. The bladder is a dumping ground for toxic waste and if we are not drinking sufficient water much of the toxicity sits in the bladder. If a person smokes it does not help. They claim bladder cancer patients probably smoked... well, I never smoked. They can put that one in their pipe and smoke it! Cancer can be random. One of the keys is to build the immune system. I suggest that you watch the series "The Truth About Cancer." It is packed with good information from alternative treatments to health products that can help build your body. I found out that the lack of Vitamin D can bring about cancer if the conditions are right in the body for it to come about and how many people actually nutritionally are starving (malnutrition). Yes, malnutrition! Mainly because we are not taking sufficient or the right nutrients into our bodies. People will consume lots of carbohydrates and sweets.. sodas, cakes, candy, chips, etc.

    Here is some information you might want to read up on. Please note it does not mean that your partner has what is mentioned, but it is good to have information.

    1. ncbi.nlm.nih.gov/pmc/articl...

    2. (Support group) bladdercancersupport.org/fo...

    3. renalandurologynews.com/bla...

    I hope you find what I have mentioned helpful. Please read, read, and read what you can find out about bladder cancer and especially the immune system.

  • Thank you so much for all your advice. I`ll keep you posted.

  • Sorry i had no experience with BCG but hopes it all turns out well for him.

  • Hi--I only had one BCG treatment before my team of Drs decided that I needed a radical cystectomy/prostatectomy. But I did have frequent and painful urination after that one treatment (also after my cystoscopies). My Drs. prescribed phenazopyridine (commonly referred to as pyridium). It helped some with the pain. One side effect is bright orange urine which stains everything it comes in contact with. It might help your partner. Good luck to both of you.

  • Thanks, I`ll pass this on to him!

  • My fifth bcg treatment had me urinating every five minutes. Didn't do the sixth.

    Cystoscopy showed redness. 2 Urologists think it might be from the treatment.

    Biopsy 11/15. Maintenance bcg will be given. Trying to stay upbeat.

    The catheter drives me nuts. Horrible.

  • Arami sounds like you've picked up an infection go back to your urologist

  • Hi there I've been on bcg fir a couple of years and I've had the same problem to a lesser degree. I told my GP and he's prescribed something for me which has eased the problem. So please talk to your GP I'm sure it will help. Best of luck for the future.

  • Hi everyone, the support on this forum is fantastic, it`s great to feel a bit less isolated! He was recently tested for a possible infection and he doesn`t have one. Gradually the urinary frequency and pain seem to be decreasing so I think the BCG will start again soon (he will be speaking to his nurse specialist again on Monday). His situation is complicated by the fact that he had a kidney removed a few months ago because the cancer in his bladder was probably "seeding" from there, so certain pain relief medications might not be suitable. But we`ll clarify this on Monday I hope.

    Thanks again and best of luck to you all.

  • Talk to your GP but I had something very similar - it was prostatitis. A course of target specific antibiotics worked for me. Tell him I know the feeling only too well and god luck.

  • Thanks Graham. He`s been given some new antibiotics and things seem to be improving, fingers crossed!

  • Looks like he`s going to need a radical cystectomy. He`s devastated about this. I think I may have finally persuaded him to go along to the monthly support group at the hospital, but does anyone have any suggestions about coping with a stoma?

  • i am in remission from bladder cancer, but have constant UTI's. Often, even when i don't have UTI's, i have itching and pain at the of the vagina or uretha. (i can't tell which it is.) i have mentioned it to the urologist and get no answers. i have just written to a dr. lamm (just look him up.) he is a fairly well-known specialist who may have some info. so far, my own interpretation of this is that it's a precursor to a UTI. you have not mentioned UTI so maybe it's has nothing to do with UTI's. honestly, i had less trouble with the BC than i'm having with the UTI's.

You may also like...