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

@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?

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 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?

@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.

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

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.

@hikercalifornia, welcome. It's been a couple of weeks. Has the pain started to subside or are you still experiencing the burning when urinating?

Dear Hikercalifornia,
I am about to have 3rd BCG induction treatment this Tuesday. So far the pain hasn’t been as bad as when they do biopsies. I take Buscopan (hysocine) that reduce bladder spasms and a lorazepam prior to treatment. If pain bad, repeat the buscopan. Talk to your GP re medication. I also find a low dose amiltriptaline & Lyrica helps. (Which I take for pudendal neuralgia & peripheral neuropathy pain) Oral urine alkalinizer 4 times a day, plus lots of water. I am also looking into TENS machine placement to help me keep the initial BCG insitu ( I have small bladder capacity from pelvic radiotherapy last year) Anyone else have any suggestions. Please reply.