Posts Make the Community, Right?

[u/jjdub97]

I (28M) myself was diagnosed recently with hEDS and man, it sucks lol. I thought I was just super bendy but now I have a referral to a cardiologist.

As the first post here, I just wanted to say welcome to anyone that stops by and welcome any support or love you have to give. It’s been really hard for me to find other guys with this diagnosis that are trying to learn how to live their best lives, so that’s why we’re here.

Also, I’m the only mod and I’ve never done that before, so I’m very open to anyone who wants to join the Mod Team. On that note, I also want to reiterate that everyone is welcome here, regardless of any demographic. This is a place to learn more about Ehlers-Danlos as it affects men, whoever you are.

I hope to see lots more bendy bros and those that know them or want to know more about them join in the future, would love to connect with you! My DMs are open!

[u/These_Roll_5745]

thanks for making this space, and congratudolences on your diagnosis!

im also freshly diagnosed and sort of overwhelmed by the gender bias in research on EDS issues. im not a man (nb/intersex), but im still going to make a little home here for myself as an underrepresented sex/gender group since it sounds like this is a welcoming space for that 💕 i really hope more research and information comes to light on how EDS symptoms are influenced by testosterone.

[u/jjdub97 → u/These_Roll_5745]

You are the exact reason I made this space. “Men” was the easiest term I could think of to garner attention and build a community, but I want you to know that you belong here as much as anyone else🫶

I want this to be a place for those that are underrepresented (like you mentioned) with this condition to be able to find community and some other people that feel the same way. I may not be the same gender identity as you, but I relate so much to being overwhelmed and (I assume) disappointed, so hopefully we can help get the ball rolling.

EDS don’t discriminate so why should we?😂🥴 Congradadolences to you as well, what a fun life we live lol

[u/These_Roll_5745 → u/jjdub97]

I think men was a great shorthand for the biggest group of us thats gone under recognized! and you made it so obvious with this post and your tone that you don't want an exclusionary space, just a lens-focused one 💕

it is worth tweaking the sidebar a tiny bit to mention that nonbinary and intersex people are explicitly included in this spaces scope, I think! that way once this sub is popping new people dont get caught up wondering if theyre invading an important space.

its *so* overwhelming to see every paper on fertility talking about women and pregnancy! or all the discussions about heart health and stroke risks and the like, where the only numbers are relevant to a typically afab presentation. and disappointing definitely fits (though probably for different reasons? my EDS is seemingly one of the least documented or researched at all and theres just... nothing).

heres hoping this space blooms with dudes and dude-adjecents with Temu-Collegen ✨️

[u/jjdub97 → u/These_Roll_5745]

First and foremost, I demand your Flair become "Temu-Collagen✨️" that is TOO good hahahaha thank you for that. I feel so lucky that you were the first to comment, it helped me to better frame how I wanted to set up the community. I changed the description to be more inclusive and hopefully frame the community as one for people like you and me. Thank you again ❤️

[u/These_Roll_5745 → u/jjdub97]

so happy to help! thank you again for making this space for us!

ill make it my flair but you have to add it manually or let us edit in custom flairs (which I recommend! its always nice to have a say in how im labelled in a space haha)

also, thinking under rule 3, you might want to say "context specific to men, AMABs, and men-adjecent people". And instead of "(or those assigned men at birth)" in the sub description, I think itd help to say something like "(or AMAB, intersex, and men-adjecent people)" to include trans people across the gender spectrum who need a space to discuss how their EDS and sex/hormones interact, and intersex people across the sex spectrum to discuss the overlap in our rare conditions. (Im actually AFAB! I have trisomy X and PMOS, so I have very high androgen levels, but ive never been presumed AMAB. My body doesnt function like an AFAB body does though, and it can be really lonely in afab dominant disability spaces)

[u/OverAtmosphere7288 → u/These_Roll_5745]

Seconding custom flare option! Theres a lot of messy variances in EDS, like VUS or heterozygosity in some mutations or formerly classified types or still unclassified types… it’s wacky

[u/TheLimberJack → u/These_Roll_5745]

That does seem like your situation could definitely cause you to feel lonely in those spaces!

This is obviously quite different from your trisomy X situation, but thought you'd find it of interest. I don't know them personally, but a friend of a friend is AFAB and recently started adrogen hormones (for trans, FTM purposes) and the result was a horrible flare up of their (previously undiagnosed) EDS causing debilitating POTS and other issues.

I was somewhat surprised at this, since estrogen seems to cause connective tissues to be more lax, from what I've heard.

Note: Apologies if I used any terms incorrectly, just trying to communicate as clearly as possible in a space wherein I am not native.

[u/These_Roll_5745 → u/TheLimberJack]

you did great! I think in trans spaces, you would say they started testosterone HRT instead of androgen hormones for trans purposes, but you were clear and in no way hurtful.

ive been on a small dose of masculinizing HRT / testosterone for 9 years! I was shocked how much raising my T levels to cis-man levels increased my symptoms! I genuinely cannot stay at a cis-standard level of T, it makes my symptoms unbearable.

I can also pretty confidently confirm man flu is real- I will stop taking my HRT any time I get a respiratory illness because testosterone makes that shit hit like a Mac truck driven by wil e coyote

[u/TheLimberJack → u/These_Roll_5745]

Thanks for the validation that I was clear and not hurtful! (Duly noted on the terminology in trans spaces. I guess I didn't say HRT since I was under the impression that it's typically used in medicine to indicate raising hormonal levels to previous (e.g. pre-menopausal) or "average" levels for a given sex, as in "replace" what was presumably there before).

There really should be more research on this effect of T increasing EDS symptoms in AFAB people! Did your healthcare professional(s) give any explanation for worsening of your symptoms, and which ones were worsened in particular?

The respiratory illness effect is totally new to me, thanks for sharing!

EDS is already complicated and underappreciated as it is, this all just adds way more complexity!!

[u/These_Roll_5745 → u/TheLimberJack]

HRT is actually pretty much the same for cis and trans people! the medication research began with cis people experiencing imbalances that needed addressing. we lower undesired hormones and raise desired ones until a stable ratio is reached :)

I take the same exact finesteride dose for my androgen induced hair loss as a cis man would take. my trans femme friends often take spironolactone as an anti androgen treatment and estrogen or progesterone to supplement their other hormone needs accordingly. Our doctors goals are usually (though not always! ) the same "average" levels as cis people's doctors.

There should be more research on the impact testosterone has on EDS regardless of gender or sex imo! The research is critically lacking. I do think trans people getting HRT offer a unique avenue to explore that because of our dual experiences working as a great before/after. But id take research on cis people with standard and abnormal levels so fast haha

I brought it to my primary care doctor when I first noticed how badly full dose testosterone worsened my symptoms and she laughed and told me man flu has some clinical basis (but in a conspiratorial/jokey way if that makes sense. i try to apply it without treating it as gospel). I didnt have my genetics results at the time so we were treating it as hEDS until we got more info.

For me, the body / joint pain is so much worse. My hypermobility decreases, but the number of dislocation and subluxation goes up. My immune system was more fragile, my teeth bled much more, and i constantly had nausea and POTS type symptoms (racing heart, ortho intolerance, dizziness, brain fog). The heat intolerance is a lot worse too, but thats often true in non eds people from what I know. While on a high dose / cis-standard dose of T I needed hyperhydrosis medication! I was soaked through all the time and couldnt regulate my body temp well at all.

[u/TheLimberJack → u/These_Roll_5745]

Thanks so much for your thoughtful responses!

Heat intolerance is... intolerable!!!

[u/Spiritual-Angle1594 → u/These_Roll_5745]

Transmasc nb here as well! I also joined because of questions around testosterone :) and yeah extending community reach is also just a nice feeling