Anyone have pain after BCG Treatments, especially with urination?

Yes it’s very annoying but you will get adapted on the 5th and 6th , this what happens to me when I finished the 6 inductions last week.
Surely not easy but better than going to a harsher situation.
Wish you a better adaptation to cope with the inevitable pain.

Good Morning from California ,
I have received initial 6 BCG treatments

Maintainance 3 BCG treatments

Maintenance BCG 3 treatments and now have pain , burning when I urinate and drinking lots of water

Has anyone had this type of pain after the maintenance regimen?

What did you do for it

@tgsmith
Yes, I can stop. I have put off starting this week due my bloods plus still have dysuria from the biopsies. From what I have researched if your continually immunosuppressed, BCG treatment has a lower overall success. But I will give it a go. Last year breezed through platinum based chemo & full pelvic radiotherapy. (For mixed histology small cell bladder cancer & urothelial cancer in situ) If BCG treatment ineffective, there is intra vesicle chemotherapy.

@janine1991 I don’t know if there is a right answer, I do know that the pain I had with the last three BCG treatments was unbearable I have said multiple times I could not would not do it again, thank God my last cystoscope was clear my suggestion would be do what is needed. If it becomes too painful can you not always stop?

Thankyou Colleen, Yes both Oncologist & Urologist aware. There is no specialist nurse employed by either private practitioners. I am endeavouring to reduce all irritating substances that cause a flare up with cystitis and fortunately it is working. I start BCG Rx next week (3 weeks post CE / biopsies) So will mention to nursing staff at private hospital about my history. I would postpone the treatment if I felt I wasn’t stable. I have no other choice but to try this treatment. Will keep you posted re progress.

@janine1991, that's a great question. I'm tagging @scbil @sparkyconnect to see if they can share anything about their experience with radiation cystitis and treatment timing.

Janine, is your oncologist and symptom management nurse aware of the cystitis and your concern about starting BCG treatment in 3 weeks?

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.