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!

Hello @caligodgirl

It sounds as if you have sought out a lot of opinions and you really have advocated for yourself in this matter. Good for you!

I'm going to tag @kanaazpereira, a Moderator with Mayo Connect, who leads a discussion group about GI disorders and Gastroenterology Surgery. Perhaps she will have some suggestions for you. I'll also tag @JustinMcClanahan who also is a moderator in our Chronic Pain discussion group and @lisalucier who is a Moderator for Women's Issues. Also, some of Mayo's mentors, @dawn_giacabazi @jimhd and @johnbishop who all deal with chronic pain.

Continue to post and let us know how you are doing with finding a doctor to help you treat this problem.

Teresa

Hello @caligodgirl,

I'd like to add my welcome to Teresa's. I'd also like to thank you for sharing about yourself and the struggles that you are facing. While I do not have the same issues, I do suffer from chronic pain and severe joint damage, and I know how debilitating pain can be, both mentally and physically.

Here is a link if you would like to get in contact with Mayo Clinic to seek an appointment and opinion from Mayo Clinic, mayocl.in/1mtmR63.

I am also going to share a few links to discussions that you my find interesting. Feel free to click on the links, read through them, and participate where you feel comfortable:

- Digestive health issues or womens health issues? https://connect.mayoclinic.org/discussion/digestive-health-issues-or-women-health-issues/
- Scheduling sacrocolpopexy and cystocele repair...more than a little scared, https://connect.mayoclinic.org/discussion/scheduling-sacrocolpopexy-and-cystocele-repair-more-than-a-little-scared/
- Chronic abdominal pain, https://connect.mayoclinic.org/discussion/chronic-abdominal-pain/

Hello, @caligodgirl. I'd like to add my welcome to Mayo Clinic Connect. I also thought you'd like to meet some other members on Connect who have talked about abdominal scar tissue, or adhesions, like @judydex007, @rdrdhap, @ginpene05, @kag13 and @nonnie1.

Here are some discussions on Connect that may be interesting to you on adhesions:

- recurring abdominal adhesions: http://mayocl.in/2qWRN2R
- Bowel obstructions caused by adhesions following abdominal surgery: http://mayocl.in/2nhtuhj
- Scar tissue surrounding organs: http://mayocl.in/2o7g2LT

Have you found any strategies that help at all with the pain?

Hi Cindy @caligodgirl

I would like to add my welcome to Connect along with the others. I can see you've already gotten some good information from Teresa @hopeful33250, Justin @JustinMcClanahan and Lisa @lisalucier. My chronic pain is minute compared to what you are going through. It's really good that you are a strong advocate and are asking questions and looking for answers. You are not alone. There is a TED talk that I found very inspiring and helpful. Hoping it may give you some help or insight.

What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John

Hello again @caligodgirl

Since you last posted, I did find a website of specialists who study this disorder. Only a few are in the U.S., however, one is at Wayne State Univ. which is in Detroit, MI and there are a few others who do some work in the U.S. Here is the link to the website where they are listed by country and name, http://adhesionrelateddisorder.com/doctors.html. It looks like Sweden has done a lot of work in this area.

Also, here is patient website with information from others like you, http://www.adhesionrelateddisorder.com/

Teresa

@caligodgirl another hello again ☺ -- I forgot to mention another tool I use for research on drugs, medical procedures, etc. is Google Scholar (https://scholar.google.com/). It is useful to find the latest info on topics and allows you to sort the links it finds by date. I did a quick search on the phrase adhesion related disorders and it came up with quite a bit of information. I'm not sure if it's helpful but it could be:
https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2018&as_vis=1&q=adhesion+related+disorder&btnG=
John

Hi Teresa,
I cannot say thank you enough for this information and all the other info and links from the other mentors, moderators and members. GOD Bless you all!! I will keep everyone posted as with what I learn and who I see so that it can b shared.
Sincerely,
Cindy

Thank you John! This information is very much appreciated!
Sincerely,
Cindy

went to orthopedic md, given shot in knee. was told it will not take effect till about 3 days hopefully. this may not be a big thing but when it brings up the blood pressure into a deadly high it is very serious. and as we all know, ouch it is very, very painful. i thank my lucky stars tht this is not as serious as some of us have. i pray for all of us. love peach barb