@ladyrsanti , I think that was me. I had it when I was 19 back in England. Yup, it's really painful, and few doctors know of it. Glad you got diagnosed. I haven't had a flare for years - have they come up with anything that can help with the pain? I hope so.
THANK YOU! Not yet. My dr. is doing some research into the disease but it sounds like the pain is best treated with anti-inflammatory otc types - which is what I usually take.