hEDS and surgery?
So I heavily suspect I have hypermobile Ehler Danlos Syndrome. I’m trying to get an appointment to see a specialist but I assume it could be a while before I get any kind of diagnosis. I’ve struggled with chronic pain, especially back pain, for years and have many other symptoms of the disorder as well. Gastrointestinal issues, migraines, hypermobility, and brain fog. I won’t get into convincing y’all about it because that’s not the point.
I wanted to ask if anyone with EDS or hEDS has had top surgery and what their experience was like. How was the surgery itself, did the results come out how you wanted, and how was recovery? I’m mostly worried that the anesthesia won’t work correctly and that recovery will be super painful. I’ve never tried behind the counter pain meds and I’m scared they won’t work fully on me because I’ve proven resistant to some over the counter pain meds. I’m already in pain all the time so I’m not sure if recovery will be unbearable.
Of course I will bring up these concerns with my surgeon, but I wanted to hear some personal testimonies from people suffering with similar issues. Also sorry to the mods if I’m posting a bunch on here lately, my consultation is coming up very soon and I just want to be prepared.
Posted Mar 1, 2026, 2:33 PM UTC