Where Do You Get Treatment For IC ( Interstitial Cytitis)?

Where do you get treatment for IC ( Interstitial Cytitis)? I am one of the 5% of 4 million that has severe Hunners Ulcers and my bladder is severely diseased. It is shrunk and holds little. It gets infections that are not caught until it goes to my kidney or kidneys. They compare it with cancer pain of the bladder and the infection to the kidney to kidneys stones. Two of the most painful medical conditions, yet want to give you little to no pain medicine. Suicide is big with IC because of this. I have so many Urologist where I live and one doctor will see anyone with IC. But never saw anyone like me. He is polite and cares but no answers. All he had he tried. But won't deal with the pain. I go to ER and no one knows what it is. I get urine samples saying no infection, when it is. You can look at it and see it. Wait two days for a culture, and it goes to your kidney and in your blood. You are very sick and in the worst pain possibly imagine and they send you home. They are treating it like a UTI. Took twenty yrs to be diagnosed. I moved away to find only one doctor and he is giving up. Why is this being ignored? Where do I get help. I was in bad shape but because it gives a false no infection, I end up so bad, I am going to be in the hospital with infection in my blood stream and a compromised immune system. What do I do and where?