Get well soon sis

Amazing, will have to have a read! Makes sense finding the root cause as it may be more effective in managing the symptoms.

Right now I’m in the early stages and it is a lot of bloodwork.
Although you may not have hypermobility issues, there is a book called Disjointed. It’s fascinating how it talks about how all these diseases are intertwined-MCAS, EDS, Endo, Auditory Processing, PCOS, ADHD, Autism. Each chapter is written by a different clinician and it talks about tests to get done and how to talk with doctors about these symptoms. 1 out of 10 women have endo. The ratio of hEDS is 3:1 women to men. So there is a reason more women have it. Mast Cell is usually an underlying condition to another condition, not the main one (this is what my geneticist told me). There is usually a main disease driving the Mast Cell-it could be an autoimmune, endo, etc. I have found the book very educational and it recommends other resources.

That's so interesting! I'm sure I have auditory Processing Disorder too.
At least some good can come out of your suffering, hopefully the research will provide options for sufferers in the future or at least a better understanding of it. What sort of things are they getting you to do? Is it like a trial?

Yes it is a lot of take in. I thought I would feel relief getting an endometriosis disagnosis but I've found it also leads to more questions. I'm also interested in the comorbidity between endometriosis and adhd/neurodivergence because i think there is something there even though doc has said there isnt.

All the best for your surgery. I hope it offers you some respite <3

I went to Mayo and am still working with them. I have Hypermobility spectrum disorder/Mast Cell Activation Syndrome/Dysautonomia as well as Auditory Processing Disorder (I knew this one-but didn’t know it was linked). Apparently, these are all linked together. Mayo enlisted me to be a part of their research subjects on hypermobility disorders because so little is known and there is no gene for my type. I have a couple visits with them in October, but I have to get an anal resection surgery on Monday from this endometriosis disease. One thing at a time. I’m finding out a lot, but my emotions are so overwhelmed by learning the root of my lifelong issues.