Hi Teresa, I cannot tell you how many specialists I’ve seen and have gone from UCSF, Stanford, University of Columbia in Missouri etc. I’ve been my biggest advocate for years an as I read one of these posts earlier the person mentioned “knowing your body better than anybody else” I have to agree 100%. These adhesion had gotten so bad starting in 2012 and after having donnevery test imaginable (ct, mri, colonoscopy, upper endoscopy, ultra sound and X-rays NOTHING was showing up for the case of this excruciating pain, weight loss and bruising. Finally my OB/GYN talked a general surgeon into exploratory surgery and they found the adhesions had formed between my abdominal wall and large intestine. Every time I moved or move it pulls the intestines and the doctors said it was so bad that I could have lost my life.
I’m sorry this is so long am to answer your question in regards to Mayo Clinic, no I have no been referred there yet but I’m ready to talk to my PCP about getting my a referral sent. There is a doctor in Los Gatos, Ca that specializes in nothing but endometriosis, abdominal adhesions and Chronic Pelvic Pain by the name of Dr Cook but the out of pocket for me would cost $20,000-$30,000 and that’s with great health benefits. I had to resign from my last job and have not worked for 4 years so coming up with that kind of money is next to impossible.
I do know that 5 states have legislatively recognized that this is a disease which is referred to as ARD adhesion related disease, but there just isn’t a lot of research being done for people suffering with these kind o issues. I appreciate this connection as I have always known and believed that men and women have had these kinds of problems way before me and I’m hoping we can all connect and share notes, experiences, information, anything that can help us relieve this pain to live with some sort of quality of life.
Again, thank you for the advise and I’m sorry this is so long!