I'm so sorry. I feel as though EDNOS can have an actual physical cause that they just haven't found yet and then they quit looking. It's horrible how many people are completely failed by the medical system, particularly in the US, but other places, too, I am sure.
There is no one to advocate for patients. Only patients with a lot of money (and medical professionals in their family or friend group) can get decent, competent care. Everyone else is at high risk of being a malpractice victim. There should be someone fighting for you or fighting WITH you.