I agree. That site has been the most instructive and helpful to me. Sadly, even though I have printed their information and taken it to physicians with my symptoms highlighted in yellow, my concerns have been dismissed as unrelated to the diagnosed cyst (but no one can provide an alternate diagnosis or pain relief). My greatest battle is finding a sympathetic ear among providers, not in finding information about the disorder. I have applied to join a Facebook group which discusses this problem and possible solutions. I don't know why the established medical community seems resistant to addressing this condition.