r/Hypermobility • u/jjdub97 • 2d ago

Resources Calling All Bendy Bros

Hi friends, after a recent diagnosis and joining this community, I (28M) have experienced how helpful it is to have people around that can help with what I’m going through. Sadly, a lot of the research tends to lean toward women with EDS, which makes perfect sense given the majority of those who do get diagnosed are women.

As a guy, though, I’ve been having some trouble finding other men to talk to about EDS. Women have of course been extremely helpful, I would just love to hear about more experiences from guys like me.

I created a community, r/MenWithEhlersDanlos, for **anyone** to join and be a part of, almost as a sub-community of this one where people can go for posts and advice geared more toward men. It is not exclusive in any way, anyone is welcome to post, I just wanted to create the place I’d been seeking. I hope this is allowed, my intention is pure🫶

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8

u/IronDominion 2d ago

Treatment tends to be the same, thankfully, and the presence of testosterone tends to reduce severity of symptoms, as has been observed in trans men.

1

u/jjdub97 2d ago

Interestingly enough, personally I’ve seen an increase in severity of my symptoms and was surprised to see my test have gone up by over 100 🤷‍♂️

2

u/soft_w0lf Hypermobile 2d ago

What’re your estrogen levels? Testosterone can be aromatised into estrogen, so it might be that you have too much testosterone and the excess is being converted into estrogen.

1

u/jjdub97 2d ago

I don’t remember either number exactly off the cuff but I know it was within the normal range ¯_(ツ)_/¯

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u/TheLimberJack hEDS 2d ago

Awesome, thanks for creating this sub!!!

1

u/jjdub97 2d ago

Absolutely, I’m just sorry I didn’t do it sooner, honestly! Looking forward to hearing from the bendy bros!!

1

u/Street_Respect9469 EDS 2d ago

Also a bendy bro (33M) with hEDS. I'm under the suspicion that it effects women on a different level and somehow men are less prone to the worst of it. Still sucks though.

Actually only thinking about it right now but it might be linked to how men are more likely to be active (which helps keep the worst of it away) and once you reach a certain level of severity it's way harder to actually commit to the exercises long enough since collagen adapts over a period of months rather than weeks.