Hi T!
Obviously I can't reply from experience
but I do know that your type of pain can be unbearable. My father had pc and his pain broke my heart. Even with pain patches we could barely control it.
Are you on pain medications? IMHO, you should have the full benefit of any pain therapy that's out there. Another thing we mention to people who join in our Chronic Pain family is that sometimes going to a pain psychologist can be helpful. Dealing with pain 24/7 can easily push any of us to the brink. Often having someone to talk to who has other ideas on how to handle the pain can help.
Another thing...do your doctors understand the amount of pain you have? If not there are good ways to get across to them.
I will ask in my prayers that you find some relief...and soon!
Chutzie