Hi @tahardy24 and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this longstanding MALS discussion group in the Digestive Health group (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/) I did this so that you can connect with other members living with MALS like @astaingegerdm @kariulrich @jmmb @lasirvent @jayhawk57 @redhead63 @ukmalsman and more.

Tahardy, while your photo smiles, I can hear the frustration in your words, how you're fed up of the pain and lack of understanding from professionals and from those around you. Here, you'll find people who get it. I know you'll get some strategies of how to be heard. I'm glad that you're seeing a counselor, too despite objections from others. It's important to have focused time on you. It is typical that referrals will be reviewed before getting an appointment. Did you self-refer or did your GI specialist make the referral for you to Cleveland Clinic and UofM?

Ugh! So sorry for you situation. Many of us have felt your frustration. The good news is you have a diagnosis. I live in the Dallas area and really had hoped to find a doctor closer than the Cleveland clinic and or the Mayo Clinic (although I would have been open to it if I had no other option). Once I got the diagnosis the search was on for a doctor. It took 3-4 months between diagnosis and surgery. There is a doc in Fort Worth with a lot of experience with MALS. I contacted his office. They told me to fax all my records and then called to tell me he would not take my case. No explanation.

That was very disappointing. After the diagnosis I tried waiting to see if I could live with it. So to be turned down after deciding to move forward made me question everything again. My GP recommended one of the best vascular surgeons she knew. When I saw him he said I know who you need. With no hesitation he recommended another vascular surgeon who would do it robotically. I met with him and had the surgery.

Al that to say, be encouraged. From the stories I have read on here, it is not a quick process. I know that feeling of just wanting to rid yourself of the constant pain and get back to normal. Hang in there. You will make it. The counseling is good. You need to take care of yourself in other ways. Counseling, foot massages, whatever makes you feel good because the constant pain and awareness of your condition can suck the life out if you. Not to mention people like your family And friends who just don’t get it.

Keep hanging on!

I feel the same. My whole life is falling apart. My husband also does not understand, although he tries to. I am a shell of a human at this point. All friends have disappeared because I can no longer do any of the activities I used to. I feel like the medical community has completely failed me on so many levels. I am 39 and put off having kids because I was so ill the last ten years. We kept waiting for things to "get better" and they have only gotten worse. Worst of all, no doctor I speak with can provide any real clarity on any of my symptoms. I did group and individual therapy for two years (twice a week!) and was repeatedly told I have "conversion disorder." I still do therapy now, but the trauma from being treated as if you are completely insane is so deep. I have many issues, and it is really hard to know that everything I ever complained about was true and I was told for years not to trust myself and what I felt.

I have a very similar story to yours, I am curious how you are doing now and if you had surgery?