BCG side effects: Anyone dealing with pain and frequent urination?

After I'd completed the BCG "induction phase" (one dose/week for 6 weeks), I'd developed severe pain, level 5-7, during urgency and urination as well as frequency of 3-4 times/hour. I had a cystoscopy after that and saw that bladder wall was bright red. My urologist at that time said he'd never seen anything like it. He offered a cystectomy or else advised I continue with BCG. I changed urologists but opted to continue BCG. Second urologist offered mirabegron 50mg. After using that for several days I noticed a very slight reduction in symptoms. I was also prescribed phenazopyridine (AZO). I got a little more relief from that but directions were to use it only a couple of days in a row. Neither of these meds helped much. The pain only got worse.

Long story short, after many really difficult months I went to an Infectious Disease doctor who diagnosed me with BCG Cystitis and treated me with three antibiotic medications generally used to treat TB. Within two months the symptoms began decreasing and within three months they had disappeared entirely. My uro-oncologist had stopped the BCG and started me on Gemcitibine/ Docetaxel.
Ultimately I had 18 months of BCG and 18 months of Gem/Doce. Those treatments ended January 2026. So far no evidence of disease.

Last week I completed the first of the BCG maintenance treatment and for the next two days, had uncontrolled bladder incontinence - so severe that I lost control a few times and actually urinated on my bathroom floor since I could not reach the toilet sooner and literally had a flood. I ordered rubber panties from Amazon since my second treatment is tomorrow. I am determined to stick with the treatment plan but to be forewarned is to be forearmed so I will utilize those panties. This experience can certainly reduce one's self-esteem but with bladder cancer, we understand it goes with the territory so to speak.

What can I say? None of us have asked for this horrid disease but we have to try our best to endure throughout and remain as emotionally and physically strengthened as we possibly can.

My best wishes for every member.

@mitsyginger - It's always so good to hear of a member who is NED. You certainly deserve good news after going through all you have with these various treatments. If I were you, I would celebrate and have a huge slice of scrumptious chocolate cake (make that many pieces!).

@deidre77
Thank you for that info Am starting this procedure Oct 1 so i will be prepared.

I am experiencing the same pain after my 11th BCG treatment. My Doctor ordered a Urine Culture. I am way on the results.

In my personal experience, I believe that the pain is a warning sign that perhaps things need to change. I experienced significant pain (6-7) after treatment #11. I had a urine culture at that time that came back negative so my urologist elected to continue to treatment #12. After that, pain increased to an extreme level. Azo did not help and with little reaction from Urology team I went to an Urgent Care where I received antibiotics and the pain fully subsided after 3 days. During the following week, my knees and ankles swelled to the point that I could hardly walk. The swelling subsided in about two weeks but I continue to have significant pelvic pain. I have since had a confirmed diagnosis of Reactive Arthritis, a side effect that apparently only affects 5-6% of BCG-treated patients. Urologist says that I am done with BCG and should transition to Gem-Doce after 6-month rest.
To samy123's question, I did not experience urgency, but I was prescribed Mirabegron for bladder spasms (feeling the need to pee every 20 minutes) and it worked well for me.

I had my 8th BCG treatment yesterday and it was horrible! (Last week I had #7 as part of the maintenance program). Since it was suggested that it is best to try to keep the BCG in for 2 hours, this is the first time I have been able to do this. Following the treatment, I had uncontrolled bladder "flooding" without any warning and as a result urinated over the bedroom carpet and the bathroom floor and then felt so weak and miserable from the ordeal and having to disinfect every inch. I had this incontinence all through the night and today I am dealing with this but now using tons of protection. Today I feel like I have been through many wars and have decided I will not be returning next week to the infusion center for the last of the first part of maintenance treatment. For that matter, I will discontinue BCG forever! I also understand how going from one treatment to another, one scope to the next must be emotionally and physically draining and I have been on this merry-go-round for only over a year now.

For those who find this instillation is relatively easy - they are fortunate. Since BCG has around a 65% success rate, many who have this treatment will realize success. When I speak with my doctor soon, I don't know what he will have to offer. I am scheduled for a cystoscopy in three months so I will learn what the result will be. I have NMIBC and even though doctors try to dissuade people who have this from getting radical cystectomy, I have been thinking about it. The question is... even though I am 81 years old (although cognitively sound (hmm...I wonder about that) and have heard stories about those who have cognitive issues associated with this age --- seem to go downhill far faster after having this surgery which takes several hours. Oh... how I feel for those much younger women and men who must grapple in many different ways with this type of cancer. No cancer is a good cancer.

What can I say? When I was first diagnosed with bladder cancer over a year ago, I was shocked and saddened.
Now... I just feel defeated. I suppose the natural accumulation of a lifetime of ups and downs contribute. I have tumors which keep appearing and I am unfortunately aware that this may very well be the case for years and years as I read the many accounts of others.

This is not intended to be a negative rant - I am only reporting on my singular experience and feelings.

I wish to hear of members' successes since it serves to replenish dwindling hope.

My best wishes to all.

@brian14
Thanks for your post. I too, had 6 BCG treatments and as a result was diagnosed with reactive arthritis which was then diagnosed as Polymyalgia Rheumatica. I have since started on gem/doce maintenance and prednisone for the autoimmune disease. BCG is not for everyone.

@notaquita
Thank you for your comment. I find it very interesting. I have my annual PCP checkup in 3 weeks and I was going to talk to him about a new symptom that I have not mentioned in my previous posts (thinking that group members would think that I had lost my mind). Aside from the continued pelvic pain (from the reactive arthritis), for the past few weeks, I have had difficulty getting up and down, in and out of the car (due to pain in the back of my thighs) and of all things......sitting! If I sit for more than 15-20 minutes, my butt is extremely sore. Although my symptoms are not a full match for Polymyalgia Rheumatica's numerous symptoms, mine are a partial match. I don't like to jump to any conclusions but I wouldn't mind being tested for this same autoimmune condition. P.S., I like your username.

My understanding of Polymyalgia Rheumatica (PMR) is shoulders, hips & thighs (mine were backs of thighs) are the main symptoms of PMR. At my worst, I couldn't get out of a chair or lift my right arm. Horrible pain! The lab tests ESR & CRP are sometimes used to diagnose but not always. If prednisone clears the pain in a couple of days, its probably PMR. PMR is a precursor to Giant cell arteritis (GCA) which is very dangerous and if not treated ASAP, can cause blindness. My mother had GCA and lost her eyesight. I hope you get relief soon from your PCP. And yes my username is something I try to do....never quit!