Please don’t use acronyms (IC, BPH etc.). At least not until after you spell out the whole thing first.
That sounds dreadful for the two of you who aren’t peeing. You both mention having urologists which is good but do you also have nephrologists (kidney doctors)? One of main jobs of your kidneys is to clean your blood which results in pee (urine). If your kidneys are working, there has to be urine and it has to go somewhere. Are you catheterized?