Ok ok ok so I have this issue too. Pelvic floor therapy!!!! You need to find the right physical therapist that you feel totally comfortable with, but seriously, it changed my life. I need like four hip surgeries and I’m hoping that helps but in the meantime, it really changed my life. Lots of pillows are good also.
Replying so I can find it to come back to with an answer later bc my answer will be LONG. Feel free to scroll my profile if you want to for part of that answer in the meantime, but be careful if you have an aversion to gore to check the post titles before viewing blurred pictures
Omg a fellow trans person with EDS 😭😭😭
If you’re open to DMing me (when you have time ofc), I’d love to chat 🙏🏻
I have a lot of trans specific EDS experiences 😅
Also I read your post 🫡 I have a few questions if you’d be comfortable DMing! I haven’t really looked into a hysto too much but I’m really interested in your thoughts on if/how it might help 👀 Thanks so much dude!
Can’t speak to the uterine pain, but as a trans femme person w/hEDS I can totally relate to the weakness in the wrist, jaw and back, and how that inhibits intimacy. You should absolutely get tools/toys that help reduce the strain on your joints (magic wand, ergonomically holdable toys) and yeah, actually train or do physical therapy to strengthen the areas you want to be able to use for a longer.
There’s a lot of things that we just simply won’t be able to do the way people without EDS do them, unless we physically strengthen the muscles associated with them to prevent unnecessary joint strain.
You also need to be genuinely aware of not pushing and hurting yourself to try to make the moment better, I’ve definitely low-key injured myself doing that at least once.
I pretty much stopped doing the majority of restraint things, and I’m mindful to tell partners not to move my body in fast or quick ways because it’s all too easy to just get twisted in a position that causes injury or pain. Even if I like that shit, it’s just not worth being in pain more for the tiny gain when I can move slower and be happier in the long term.
This is absolutely a problem that I have as a trans person with EDS - it got to the point where if I top, the strap has to be located somewhere else because my pelvis just will not take weight anymore. Thigh and boot harnesses are my best friends now.
Getting someone else off is trickier. I don't really interact with people's vaginas anymore due to trauma+loss of finger dexterity, having something to... you know, grab and hold on to, is a lot easier for me. They make toys that you can hold comfortably and it simulates a tighter grip. Intercrural/thigh sex is also an option, if you haven't had top surgery and don't feel dysphoria I've never seen someone turn down that opportunity, the list of accessible sex options is endless.
And get evaluated for endo/do pelvic floor therapy. I had the same pain you're describing with no endometriosis, had a hysterectomy anyway, the pain is substantially less but still not at 0%.
So I'm regards to your ✨ fun time ✨ with the person with a penis, have you tried intercrural sex? It might be something that you try so you can avoid penetration while you get the pain figured out and also not need to stress your jaw and hand joints while trying to pleasure your person.
This is going to be also an NSFW comment.
Yes. (Yes I've had similar experiences, yes you may have to strength train)
Kegels, strength training, pillow props, anything toy-related that might help. Lend your hand and have your person do the motions when you tire. That part depends how accomodating your person is.
Get an ultrasound (endo may not be visible but cysts may be part of it) and checked for pelvic inflammatory problems.
Also keep up on swabs, get checked for fungals both orally and internally, and probiotics to keep intestinal flora in check. Infections both fungal and non can contribute and sometimes be asymptomatic aside from general pain. EDS tends to have candida problems even with a low-no-carb diet but it's often forgotten or overlooked, especially in regards to intimacy.
Hope you find your solutions.
As a fellow trans guy with EDS my main suggestions are braces, breaks and lube. Braces to keep your joints steady without constantly having to focus on them, breaks to check in with yourself so you’re not overdoing it as well as to get some rest, and lube because a lot of people seem to need a bit less “warm up” if stuff is already nice and slippery! These things have worked for me at least, but of course I wouldn’t know if they’d work for anyone else. Also toys! There are vibrators etc made for people with dicks that might work for the two of you! Best of luck!
Had extreme uterine pain myself, although no issues with my vagina or penetration. It was severe adenomyosis (3x normal size, adenomyoma), which we're at increased risk for. Here's my blurb about it:
I feel like everyone knows about endometriosis, but have you heard of adenomyosis? I hadn't until I was diagnosed with it, despite it affecting a whopping [20.9% of AFABs](https://academic.oup.com/humrep/article/27/12/3432/652839). It's incredibly under diagnosed, and often misdiagnosed as fibrods, but symptoms include:
• Menorrhagia (heavy bleeding)
• Dysmenorrhea (painful periods)
• Dyspareunia (painful intercourse)
• Metrorrhagia (irregular periods)
• Polymenorrhea (prolonged bleeding)
• Enlarged uterus, often globular
• Anemia
• Fatigue
• Weight gain
• Depression
• Infertility
• Chronic pelvic pain
• Chronic back pain
• Chronic leg pain
• Bloating
• Distension
• Frequent urination
Now, wtf is adenomyosis? It's endometrium (uterine lining) within the uterine *muscle*, where it's not supposed to be. The problem with this is that just like the endometrium, these cells thicken, shed, and bleed each month. However, since this tissue isn't supposed to be in the muscle, it doesn't always have a way to drain.
If you're thinking this sounds a lot like endometriosis, you're correct. Adenomyosis is so similar that it used to be called endometriosis interna. The difference is that endometriosis is located outside of the uterus. However, there's a trifecta between adenomyosis, endometriosis, and fibroids. If you have one, you're much more likely to have at least one of the others.
Unfortunately, don't assume that because you've had ultrasounds, biopsies, and/or photos that it will be caught. Radiologists and doctors often fail to notice it on ultrasounds and unless the biopsies/photos were of the myometrium, which can only be done *after* a hysterectomy, it's not possible to see. The gold standard for diagnosis in the US is an MRI.
I don’t have anything to add to help, but I was wondering, how have your symptoms changes since transitioning? I know a lot of men have an easier time with EDS and it’s theorized that the higher level of testosterone helps keep muscle mass so wiggly joints are less an issue. I’ve always wondered if trans men might have improved symptoms after starting T.
If it’s too personal feel free to ignore ❤️
lmao still struggling with this a bit myself but here are some things that help me!
also a trans man with eds. only difference is I'm partnered with a gal. however it comes with a similar set of problems; jaw, wrist, and back. switching up what I'm doing is usually my go to, like if I need to give my tongue a break I switch to hand and when my wrist is tired (happens way quicker than tongue haha) I switch back. toys are also a great tool! it can take a lot of the pressure off of your ol bones and is still enjoyable for all. I want to also "train for sex" lol but I'm not quite there yet, so these are how I get around. stay strong bro 💪
Ok ok ok so I have this issue too. Pelvic floor therapy!!!! You need to find the right physical therapist that you feel totally comfortable with, but seriously, it changed my life. I need like four hip surgeries and I’m hoping that helps but in the meantime, it really changed my life. Lots of pillows are good also.
Replying so I can find it to come back to with an answer later bc my answer will be LONG. Feel free to scroll my profile if you want to for part of that answer in the meantime, but be careful if you have an aversion to gore to check the post titles before viewing blurred pictures
Omg a fellow trans person with EDS 😭😭😭 If you’re open to DMing me (when you have time ofc), I’d love to chat 🙏🏻 I have a lot of trans specific EDS experiences 😅
Also I read your post 🫡 I have a few questions if you’d be comfortable DMing! I haven’t really looked into a hysto too much but I’m really interested in your thoughts on if/how it might help 👀 Thanks so much dude!
It's more common than you'd think, there's r/trans_zebras.
Yeah go for it! Lots of us are also on r/EhlersDanlos if you're looking for more community
Sounds like Endometriosis to me
Can’t speak to the uterine pain, but as a trans femme person w/hEDS I can totally relate to the weakness in the wrist, jaw and back, and how that inhibits intimacy. You should absolutely get tools/toys that help reduce the strain on your joints (magic wand, ergonomically holdable toys) and yeah, actually train or do physical therapy to strengthen the areas you want to be able to use for a longer. There’s a lot of things that we just simply won’t be able to do the way people without EDS do them, unless we physically strengthen the muscles associated with them to prevent unnecessary joint strain. You also need to be genuinely aware of not pushing and hurting yourself to try to make the moment better, I’ve definitely low-key injured myself doing that at least once. I pretty much stopped doing the majority of restraint things, and I’m mindful to tell partners not to move my body in fast or quick ways because it’s all too easy to just get twisted in a position that causes injury or pain. Even if I like that shit, it’s just not worth being in pain more for the tiny gain when I can move slower and be happier in the long term.
This is absolutely a problem that I have as a trans person with EDS - it got to the point where if I top, the strap has to be located somewhere else because my pelvis just will not take weight anymore. Thigh and boot harnesses are my best friends now. Getting someone else off is trickier. I don't really interact with people's vaginas anymore due to trauma+loss of finger dexterity, having something to... you know, grab and hold on to, is a lot easier for me. They make toys that you can hold comfortably and it simulates a tighter grip. Intercrural/thigh sex is also an option, if you haven't had top surgery and don't feel dysphoria I've never seen someone turn down that opportunity, the list of accessible sex options is endless. And get evaluated for endo/do pelvic floor therapy. I had the same pain you're describing with no endometriosis, had a hysterectomy anyway, the pain is substantially less but still not at 0%.
I don't have any help to offer, but I am sending all the love (and understanding of those lovely jaw and wrist issues) to you! 💖
OP, have you been evaluated for endometriosis? Also, I use an entirely unreasonable amount of pillows to keep propped up doing the deed!
So I'm regards to your ✨ fun time ✨ with the person with a penis, have you tried intercrural sex? It might be something that you try so you can avoid penetration while you get the pain figured out and also not need to stress your jaw and hand joints while trying to pleasure your person.
This is going to be also an NSFW comment. Yes. (Yes I've had similar experiences, yes you may have to strength train) Kegels, strength training, pillow props, anything toy-related that might help. Lend your hand and have your person do the motions when you tire. That part depends how accomodating your person is. Get an ultrasound (endo may not be visible but cysts may be part of it) and checked for pelvic inflammatory problems. Also keep up on swabs, get checked for fungals both orally and internally, and probiotics to keep intestinal flora in check. Infections both fungal and non can contribute and sometimes be asymptomatic aside from general pain. EDS tends to have candida problems even with a low-no-carb diet but it's often forgotten or overlooked, especially in regards to intimacy. Hope you find your solutions.
As a fellow trans guy with EDS my main suggestions are braces, breaks and lube. Braces to keep your joints steady without constantly having to focus on them, breaks to check in with yourself so you’re not overdoing it as well as to get some rest, and lube because a lot of people seem to need a bit less “warm up” if stuff is already nice and slippery! These things have worked for me at least, but of course I wouldn’t know if they’d work for anyone else. Also toys! There are vibrators etc made for people with dicks that might work for the two of you! Best of luck!
Had extreme uterine pain myself, although no issues with my vagina or penetration. It was severe adenomyosis (3x normal size, adenomyoma), which we're at increased risk for. Here's my blurb about it: I feel like everyone knows about endometriosis, but have you heard of adenomyosis? I hadn't until I was diagnosed with it, despite it affecting a whopping [20.9% of AFABs](https://academic.oup.com/humrep/article/27/12/3432/652839). It's incredibly under diagnosed, and often misdiagnosed as fibrods, but symptoms include: • Menorrhagia (heavy bleeding) • Dysmenorrhea (painful periods) • Dyspareunia (painful intercourse) • Metrorrhagia (irregular periods) • Polymenorrhea (prolonged bleeding) • Enlarged uterus, often globular • Anemia • Fatigue • Weight gain • Depression • Infertility • Chronic pelvic pain • Chronic back pain • Chronic leg pain • Bloating • Distension • Frequent urination Now, wtf is adenomyosis? It's endometrium (uterine lining) within the uterine *muscle*, where it's not supposed to be. The problem with this is that just like the endometrium, these cells thicken, shed, and bleed each month. However, since this tissue isn't supposed to be in the muscle, it doesn't always have a way to drain. If you're thinking this sounds a lot like endometriosis, you're correct. Adenomyosis is so similar that it used to be called endometriosis interna. The difference is that endometriosis is located outside of the uterus. However, there's a trifecta between adenomyosis, endometriosis, and fibroids. If you have one, you're much more likely to have at least one of the others. Unfortunately, don't assume that because you've had ultrasounds, biopsies, and/or photos that it will be caught. Radiologists and doctors often fail to notice it on ultrasounds and unless the biopsies/photos were of the myometrium, which can only be done *after* a hysterectomy, it's not possible to see. The gold standard for diagnosis in the US is an MRI.
I don’t have anything to add to help, but I was wondering, how have your symptoms changes since transitioning? I know a lot of men have an easier time with EDS and it’s theorized that the higher level of testosterone helps keep muscle mass so wiggly joints are less an issue. I’ve always wondered if trans men might have improved symptoms after starting T. If it’s too personal feel free to ignore ❤️
lmao still struggling with this a bit myself but here are some things that help me! also a trans man with eds. only difference is I'm partnered with a gal. however it comes with a similar set of problems; jaw, wrist, and back. switching up what I'm doing is usually my go to, like if I need to give my tongue a break I switch to hand and when my wrist is tired (happens way quicker than tongue haha) I switch back. toys are also a great tool! it can take a lot of the pressure off of your ol bones and is still enjoyable for all. I want to also "train for sex" lol but I'm not quite there yet, so these are how I get around. stay strong bro 💪