Ongoing constant pain post Proton radiation

I have a similar problem, but its ongoing.  I was diagnosed in 2008. Did watchful waiting until 2014 when I opted for Proton treatment at MD Anderson.  It all went well until about 3-4 weeks after finishing treatment. The the pain and "other" problems started. I have very strong pain during urination. It was like having a bad UTI 24/7, 365. They did a couple of cystoscopys over the next two years that showed damage to the bladder wall. During a treatment follow up colonoscopy they had to do a little "spot welding" to a place in the rectum. Don't know if they are related but those "other" problems I mentioned, were problems with rectum and sphincter control. I had several embarrassing experiences where I didn't make it to the toilet in time. For two years I always had to know where the toilets were and could I get there fast enough. I would go into the sexual issues, just just suffice to say, that part of life is over. The Docs couldn't seem to provide a solution, and seem to infer "Gee, we've not seen this problem before."


I finally went to another urologist and he did another cystoscopy. He used the word "change" instead of damage. He suggested I try Hyperbaric therapy. So in the spring of 2017 I did 8 weeks and shortly after I had relief. No more embarrassing accidents. No more pain that would wake me up to pee 5 times a night. BUT it only lasted about a year. 


The urinary pain has returned in 2018. And its the same again.  I have the pee urge and have to go about every hour. I have to get up 3-5 times every night. The pain is constant, always there, though sometimes on a 1 on a10 scale. But at night sometimes it hits an 8-9 and it takes me 20-30 minutes to pee.  I tried Hyperbaric again last Fall, and this time it had no positive result, and be advised that stuff is expensive. You need real good insurance. The urologist just did another cystoscopy a few weeks ago and it seems like the "change" is worse than I recall from his first one in 2017.  He has me trying acupuncture treament now. Its used apparently for OAB therapy. He also had me try tamsulosin, but it didn't help.  The pain actually seems to be getting a bit worse over time, not better.


So five years after proton treatments, life is kind of lousy. The constant loss of sleep has had an impact on my memory, as well as being tired a lot.  I'm reaching out here because I don't want to spend the rest of my life with this misery. Hopefully soon someone will provide a solution.