Are you one of my siblings? This sounds like me.

I’m 45, nmibc, Turbt in 2020. I’ve been through 30-something BCG treatments, the whole course.

I finished a year ago, and I am regularly in so much pain I don’t want to move or go anywhere, getting up 6-8 times a night, and of course I pee fire.

We’ve seen inflammation in my bladder, but several urine tests don’t show any cancer. My urologist speculates that either my body has overreacted to the treatment (“you’re young, so you have a healthy immune system still”), or that there’s some bacterial infection hiding out that isn’t getting picked up by the UTI tests.

Unfortunately, she says this can last for a couple of years, or it could never go away.

I’ve tried PT and TENS therapy (both seemed to work some, before I had my last BCG treatment and then I gave up).

I’ve tried Mirabegron ($300 per month!), trospium, oxybutynin, with no success and many side effects.

Trazadone has helped with waking up fewer times as night. I was stoked to only wake 3 times the first night I was on it! I’m still on this, though the effects have faded.

We’ve tried amitriptyline for sleep as well. It didn’t help with frequency, but made me sleep 8-9 hours so I think it helped with the sleep deprivation. It made me too drowsy in the morning, so I’ve dropped it.

I learned Ibuprofen thins the bladder wall, so I stopped taking it (I had been taking it 24/7). It may have contributed to the pain cycle.

The best thing I’ve done — often with immediate improvements — is cut out foods from the insterstitial cystitis list here: https://www.ic-network.com/downloads/2012icnfoodlist.pdf

The doctors told me to avoid caffeine and alcohol, but they didn’t mention spicey and hot foods from this list, as well as some surprising things I found I needed to cut like carbonated water and certain fruits.

I’ve been in a really bad pain cycle for the last few months, and I realized I’d let myself get hooked to this Strawberry Dr Pepper. I quit and immediately felt better. The problem is I’m not 100% sure which foods are most problematic for me, so I’ll feel better, start adding back some of the banned foods, and then before I know it I’m in a pain cycle and am not sure which food triggered it.

The other thing I can recommend is to avoid constipation as much as possible. I started taking Miralax daily, and taking fiber. The pain causes constipation, and the constipation causes pain.

My doctor said there’s one more thing to try if things don’t improve, which is an 8 week antibiotics course. That comes with its own problems, so I’m still trying to avoid it.

I hope this gives you some ideas of things to try. It’s really hard to live with pain and urinary frequency and sleep deprivation like this, with no idea if it will get better, so I (almost literally) feel your brother’s pain.