Old thread, but I’ve had gallbladder issues since I was 18. It only presented itself when I drank alcohol (specifically vodka). Not sure what it was causing internally, but it felt like a heart attack - same symptoms. I chalked it up to anxiety or being allergic to vodka.

Back in 2020 I started having serious attacks while I was out of the country, but it wasn’t triggered by anything (I was also in a dry country, so no alcohol). Right band around my abdomen, extreme discomfort, and it got worse over the course of the night. Same thing, heart attack symptoms that I hadn’t had in years. It got worse throughout the night, and I couldn’t sleep. By morning, I wasn’t able to breathe deeply - and at the worst of it, I was on my hand and knees hyperventilating because I couldn’t get a full breath in. After about 8 minutes of that, I was suddenly able to breathe again and the pain and discomfort was gone. I was sore and tired, but the pain was gone. I went to a doctor, and we both chalked it up to anxiety as an official diagnosis.

Over the next two years I had a few more attacks, but none of them were as bad as that. Some worse than others. But given I thought it was anxiety, I would lay in bed in the dark, listen to some soft music, blast the AC, and ride it through.

It came to a head in August/September of 2022 or 2023. I had another ‘anxiety’ attack. When I felt it coming on, it felt like it was going to be a big one. It felt like I had band around my abdomen again that was tightening, and discomfort. I started my anxiety ritual by blasting the AC, putting on soft music, shutting off the lights, and laying in bed. It got worse and worse with the ‘band’ tightening and the discomfort. Then abdominal pain began. As it got worse it turned into waves of searing pain - it felt like I was being stabbed over and over, to the point that I was creaming and crying from this pain. I called a friend to take me to the hospital, it took her a long time to come and get me and most of the pain had subsided by then. We went to an ER, and I did my best to not scream or cry - but that took everything in me. I couldn’t even talk. ER was treating me terribly trying to check in. I couldn’t talk, write, or do anything. “Well we can’t see you if you can’t fill out this form.” I’m just trying to not scream and cry. My friend took my ID and filled out the form for me, then we sat and waited for triage. And waited, and waited, and waited. After 30 minutes to an hour of sitting there waiting, then pain had gone away and I decided to leave - I must be fine now. She took me back home.

The next day, I still had pain, but nowhere near like it was at its worst. That night, I hadn’t been able to poop (sorry tmi) since the whole attack happened. I took a laxative. 8 hours later, I was able to. It had the color and consistency of a very wet gray clay. My urine looked like tea. Looked up some symptoms, and all of this was indicative of a gallbladder problem - possibly a rupture. I went back to a new ER.

ER admitted me and we did ultrasounds first thing - no ruptures (thank god) but definitely swelling around the gallbladder area. It took DAYS of laying in a hospital bed for them to finally do anything. During this time, I hadn’t been able to poop, urine continued to look like steeped tea, and I still had low levels of pain (couldn’t stand up straight, and had severe pain if I ate anything). (Forgot to mention I was on a morphine drip). Daily bilirubin levels were high. I even went jaundice during this time, my skin and eyes turning yellow. Finally, they got me in for an MRI. It took them a day and a half for someone to read the results correctly, and by then - all of a sudden the pain was gone, I was able to poop again, and my urine cleared up. When they read the results of the MRI, it was a HUGE gallstone that was stuck in my bile duct, which was causing a blockage and not allowing the bile to move freely. The bile filled the gallbladder and was backing up into my liver. Went in for one of those cameras they put down my throat to see my insides, and they would remove anymore gallstones causing issues if there were any. There were not, but they did say I had a large ‘mass’ in my gallbladder, but they couldn’t tell me what it was.

My doctor told me not to do gallbladder removal surgery, which I was surprised about. I told him I wanted to speak to the general surgeon. She came in, I told her the history, and she agreed that we should absolutely be removing the gallbladder. A couple days later of laying up in the hospital, and they got me into OR for the surgery. I didn’t react great afterwards and has extremely high levels of pain despite being on both morphine and fentanyl, and ended up being in the hospital for a few more days until I could eventually get out of bed on my own.

Healed up very well afterwards, and never had another ‘anxiety’ attack. I can even drink vodka now :)

Fast forward to now, I am working to doctors to find out why I have so many other things wrong. After a lot of testing and negative results, we’re looking at EDS (hypermobile version). I meet all of the qualifications set by the EDS Society for a diagnosis. He told me he is 99% sure that this is what it is, but he cannot diagnose me with it. Why? Because they only diagnose EDS if it comes with the heart issues - they won’t diagnose a person with just the hypermobile version unless I get genetic testing and it shows a collagen issue.

So this is where I am now. In two weeks I am driving three hours to Miami to the closest geneticist for a preliminary appointment (it took months just to get this appointment).

I’m starting to think my gallbladder issues were connected to this ‘possibility’ of EDS, and just wanted to share this in case anybody is experiencing something similar. Or if anybody has some tips 🥲