Help: I have been diagnosed with behçets... - Behçet's UK

Behçet's UK

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_lisetaylorx profile image
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I have been diagnosed with behçets syndrome a few months back and got a hospital appointment on the 5th of October but I've been experiencing a sharp pain in my stomach and back ( and a few other symptoms) I'm really worried as ive been in a lot of pain. If anybody has any ideas of why I may be experiencing this pain, can you give me a message. Many thanks

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_lisetaylorx
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NerdyChristina profile image
NerdyChristina

It depends on where the pain is. I have chronic gastritis which gives me upper left and just left of center abdominal pain, and this likely ties in with my gastroparesis. I had upper right abdomen with right shoulder and back pain, but that was courtesy of a crappy gallbladder. I didn’t have stones but my gallbladder stopped working and started to die inside of my body which was super awesome (shout out to the makers of Yasmin, amazing birth control that also apparently causes gallbladder disease haha). Lower abdominal pain is totally from having GI ulcers from Behcet’s, though new theory is that I also have strictures from prior ulcers leaving scar tissue. Throw in some endometriosis and you’ve got a crappy abdomen full of issues. (I also have celiac artery stenosis so badly that sometimes I crumble in pain from spasms.)

Make note if certain things make it better or worse, including sex, bowel movements, eating, etc. Keep a food diary, and poo diary, too. Also, know that back pain is common as referred pain, and where it hurts, matters. Right shoulder and upper back? Classic sign your gallbladder is acting up.

Lastly, know that Behcet’s sucks and is complicated, but sadly other things are also still in play. We’re pretty sure I have celiac but I get so sick from eating gluten that we can’t test me. (You have to be actively eating gluten at the time of testing , and I’d already been told to give it up for inflammatory issues anyhow.) Autoimmune GI issues, or even standard ones like hernias and run of the mill ulcers are all possible.

Guna1003 profile image
Guna1003 in reply to NerdyChristina

Preach it sister 👐

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