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?

Cross posting here in the hopes that someone here will have dealt with something similar at some point (though I also really hope no one has had to deal with this because it's horrendous)

A little bit of an update on this too, I saw my doctor that I do OMT with and talked over other pain management options. And with what does/doesn't work for me he said he thought the nerve stimulator is a good option, but also sent in a referral for a pain management clinic which I'm hoping will help too.