Just got my post removed and was muted before even messaging the mods about it... probably best to avoid it if you're trans </3
edit: thank you for all the responses!! i’m new to the reddit EDS scene so i had nooo idea this was a known issue 😥 thank you for all your support here and i’m sorry so many of us have been bothered like that :/
Hello everyone,
I messaged the moderator team of /hypermobilityEDS asking them to explain how being transgender is off topic, and was met with a very hostile response, and I've been permanently muted, and threatened with being reported for harassment. I would suggest that, while it does feel unfair since being transgender is a part of the experience of EDS, to stay away from the subreddit.
Edit:
I typed the wrong subreddit title lol.
HypermobileEDS is the correct title
Hey guys, needing some advice.
I’m 28, 5’4, 155lbs, transmasc, and diagnosed with endometriosis, Unspecified Ehlers-Danlos Syndrome, and orthostatic hypotension. I haven’t medically transitioned yet due to multiple chronic health conditions.
Last year, my echocardiogram showed mild aortic sclerosis and moderate mitral valve sclerosis, and I've had a big uptick in chest pain and shortness of breath this year. My previous cardiologist dismissed it as anxiety and I never went back.
I recently had commercial genetic sequencing done that showed a cvEDS variant of uncertain significance. My geneticist appointment is a year away. Is it worth finding a new cardiologist to evaluate my worsening heart symptoms now, or should I just wait for genetics?
I've been a bit of a lurker but I have something exciting I want to share. I recently had an appointment with a geneticist and I can't explain how elated I am to finally be making progress. After all the years of uncertainty and spending so much time researching and being bounced between specialists I finally feel like I'm making progress. I was a bit scared that I was going to be dismissed but the doctor was very thorough and patient while offering advice and listening to all of my concerns. They believe that heds or hsd are the most likely culprits but want to do genetic testing to ofc rule everything else out. After so many years with no answers knowing that within a few weeks to months I can finally have a solid diagnosis is so reassuring. Sure it doesn't change a lot in my day to day but finally having a solid and probable answer means so much. I just needed to put this down somewhere because I feel like I could scream from the rooftops. It's so hard to navigate doctors and appointments and medications and therapies. These small wins are so so important and I'm so happy rn.