Anyone have pain after BCG Treatments, especially with urination?

Hi everyone,
Thankyou for all the comments & suggestions. My latest Cystoscopy showed 2 areas now with high grade CIS. (NMIBC) I start BCG treatment 3 weeks from Cystoscopy date. (Note; I was treated for small cell bladder in 2024 with chemo & full pelvic EBRT)
After each 3 month Cystoscopy I appear to get flare ups of radiation cystitis and frequent irritable bowel issues. This takes a good 2 -3 weeks to settle down. Plus slow healing from ongoing myelosupression. My question is should I postpone BCG treatment if I have symptoms of the radiation cystitis. I feel I am going to put myself through a more painful 6 weeks. Any suggestions would be appreciated

I want to clarify the Botox was for the incontinence not the radiating pain going up into my chest and down my arms when urinating. The pain did stop after the Botox and I no longer have incontinence.

I had the pain, and only a few blood clots

Yes. See the many comments below. A little blood and clots can happen and did on some of my treatments, but I'm on blood thinner. I found the pain got worse with each subsequent treatment, the first series of 6 and now my 3 mo 3 treatment maintenance, but never outside of my urinary track. Tylenol/codine didn't help much. Docs at Yale did say outcomes haven't seemed to be reduced when BCG concentration is reduced, but I'm reluctant to risk that. Uribel may help. An ice pack seemed to help somewhat. Drink lots of water to flush out the BCG. Someone below mentioned botox and another mentioned Urogesic which I'll be asking my doc about. Also, I had my worst pain when, it turned out, I had a URI at the time of treatment. Get tested first thing before introduction of the BCG as you should not have it done if you have a UTI per my doc.

This is an amazing way to communicate with each of you while on this path! I as well have radiating pain down both arms and into my index finger and thumb when urinating post BCG. The first 8 hours is excruciating pain, bilateral arm neuralgia, with passing small clots. I see a neurosurgeon since I had 5 cervical spine surgeries. This has stumped him. I’m curious how many other of you have experienced bleeding and passing of clots during the immediate hours post BCG treatment?

One more day the doctor had given me three different medications. None of the three helped.

I’m so sorry, I too had the pain that radiated upwards through my whole body. Every time I would urinate which was ever 15 minutes it started on my fifth treatment was severe on the sixth treatment, thank God it was my last treatment I personally would not have been able to continue because the pain was that severe. My urologist was not sure what it was stated I could be having a reaction to the BCG treatment. All I know is there is no way I can do the treatment again not that type of pain praise God my three months cystoscope came back clear I go back in October for a repeat. I am praying for it to be clear as I said I do not believe I could do the treatment again not with that type of pain so I do understand and my prayers are with you.

I have had several rounds of BCG. It left me pretty tired, but I could deal with that. What was difficult was the radiating pain that went in my chest and down my arms when urinating. Now I’m in a trial, 0007 Bond. The radiating pain continued. Luckily it wasn’t every time I urinated. None of the doctors seem to know why. One of them said they thought it was connected to fibromyalgia. My body overreacting to the bladder spasms. The treatments have caused me to be incontinent. Last week I had my first injections of Botox in my bladder. Hallelujah the pain urgency and leaking has stopped.

I take a pill called Urogesic - Blue and it is very effective in reducing pain and urgency.

This is almost the same as the prescription strength (prescribed to my husband) and it’s over the counter. It has helped him and the over the counter equivalent helped a neighbor who is also undergoing BCG.