I am so sorry you are going through all of this also. I have a lot of the same things as you so I would push for the biopsies. My doctors are so surprised that I know so much but I am also autistic and research is one of my special interests/talents. I had endometriosis and developed cervical cancer during my 2nd pregnancy and was medically neglected until I almost died of pancreatitis from an allergic reaction to zolfran. It took 6 years to be diagnosed with MCAS, and a slue of cormobid disorders. I’m going to try to sign up for as many eds genetic studies I can find in hopes that my genetic makeup will help others in the future for diagnosis. I have mutations on the TNXB gene as well but it is listed as limited due to Invitae not being able to run full genome on some of my gene mutations.
I will be praying for your health and answers. ❤️