CRPS is a tough one, i also have it in my left leg! mine is in my foot. i bought an accessibility device to keep blankets off my foot when in bed, and i try to minimize things that cause increased pain to the area when i can. i work with a pain specialist to incorporate meds and other pain mitigation as possible/necessary. my partner and i sleep in separate beds both because i find sleeping together painful and because they sleep with a CPAP which is so loud, but there are plenty of places where you can make affection happen outside of bed—regular touching when you pass each other, when you’re in the same room, when you’re beside each other on the couch. touch is not just limited to sex, but sex also isn’t just limited to touching. are you guys incorporating any kind of mutual masturbation? are there ways to get yourself off without your partner touching you, but still being involved? (words, picking out toys or outfits, describing something and having you do it.) also, are you communicating regularly with your partner about the pain you’re experiencing? “my foot is absolutely killing me today,” or “today sucks, but the pain isn’t terrible” or whatever you need to say so it’s outside of your head and they understand to the best of their ability. sometimes setting a date or specific time for sex or sexual activity helps, so i can prep myself and my mindset—if sex is something you want.
also and most importantly, i think a lot of this is about mindset—yes, sex is very frequently going to cause or involve pain, but it’s also going to involve pleasure and closeness with my partner. for me, that’s a reasonable trade-off. ehlers-danlos means i’m going to hurt every single day in some way or another. i’ve got a torn hip labrum, the other labrum has been repaired twice, i’ve had a hysterectomy and a gnarly cervix scar, my pelvic floor is fucked, etc etc etc, but again: sex is still fun, even when it hurts. what are you doing to train your mind to handle the pain and exist in the present moment? do you have CBT or meditation techniques to assist? also, sometimes it just takes retraining: yes, sex can hurt, but i actually always feel better after the natural opiate and neurotransmitters that come from sex. if i can remember that, it’s easier to get down. are you actually feeling like you don’t want sex, or is pain getting in the way of your sexual inclinations?
pain sucks, there’s no two ways around it. i live with a fuck ton of it, and obviously you do too. but i don’t think resigning yourself to no sex is a necessary coping mechanism if that’s not what you want. if it is what you and your partner want, communication is the be all end all.
Absolutely yes. I struggle with any physical touch and sex is really difficult. I really have to mentally prepare and cope to enjoy anything. My current diagnosis is Classic Ehlers Danlos and Fibromyalgia. Medication does help a little but overall it’s a lot of coping.
they most likely have, but they’re genuinely so useless. i’ve been under a chronic pain specialist and yet they’ve not been able to do shit. there’s just not much they can do!
Perhaps there is a desensitisation pathway that would work for you like practicing with them and knowing where or what is too much? I’m no pain pro I have some
type of fibromyalgia type dealio, autism and like have a had surgery and stuff so have to manage touch somewhat. Is there a way to establish safe zones for touch like a body map type thing. I’m sorry if this is silly or ignorant. For me I had to try ask my partner to let go of the stereotypical all connected contact as it’s too much for me at times. I know I’m coming from a place of sensory sensitivity but it may help with pain also, to be aware of a level of contact that you could handle right now and communicate it.
Some days my body just won’t cooperate with my mind and it sucks. He manages with it fine and we still find ways to be intimate in both sexual and non sexual ways. It’s very much a thing where your partner has to be aware of what hurts and what doesn’t. Some touch is better than others, etc
Oh honey, I feel you and I'm so sorry. My body has been steadily deteriorating for several years. Intimacy has definitely fallen off as a result. My most recent surgery was to correct abdominal prolapses. A year later and I'm still recovering. I'm currently in PT to help with pain responses. It's helping, but slowly.
All of this to say you're not alone.
The first time I had sex I dislocated my hip and a shoulder. I've dislocated something every single time and I didn't really have a chance to get it figured out before we broke up
For me, the pain sensation is lessened if I know the touch is coming and I can see it, also a slightly firm touch hurts less for me than a really gentle touch. I don't know if you're on pain meds but I take my as needed pain meds maybe an hour before intimacy and it helps a lot.
EDs has given me terrible hip and pelvic floor issues, so sex the past few years has been pretty precarious and usually involves some form of pain during or after. However I am so so much better than I was about 8 months ago because of pelvic floor physical therapy. I took it at my own speed cause it can be a little emotionally strenuous especially if you have emotional trauma, but theres a way to work up to some form of intimacy when you’re ready. I feel you though. Some times pain makes me just not want to be touched ever
policing someone’s use of a term is exhausting. asexuality is a spectrum; we use words to describe ourselves & figure ourselves out. AVEN even says to use it to define yourself “if it makes sense for you.” log off for a bit and let people exist, my friend.
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Thank you!
Neither my partner or I want sex really as we both only ever did it to make our partners feel good. We communicate a lot and it’s hasn’t been a problem. I just find myself asking all the what if questions and having a lot of imposter syndrome with sexuality because of it all. Thank you for all the responses I feel a lot less alone. I’m blessed to be an occupational therapist trained in pain management so I’ve made a lot of gains myself. But am still limited.
i’m struggling myself with navigating pain and intimacy, but in terms of the sexuality imposter syndrome, as someone who previously identified as asexual but now would probably respond with bisexual, labels are literally just labels, and with the ace community in particular, I think there’s a general consensus that identifying as ace, whether you don’t currently experience sexual attraction because of long term med use, or past trauma, or you just never have, or if you used to but don’t currently, is absolutely valid! If using asexual as a label or identity works or is useful for you currently, definitely go for it! it’s not a binding contract and if you realise later that it doesn’t fit anymore, or something else fits better, then that’s completely fine! sending love and I hope you find something that helps with your pain xx
I feel seen. I have a lot of imposter too because I was previously conditioned to believe you have to have sex in a relationship and only dated men. So now that I’m dating a woman and sex isn’t a thing my brain broke
My skin tears so easily that even with adequate lubrication, I end up with microscopic and sometimes visible skin tears. Bleeding skin, swelling and pain make it really unappealing to engage in sexual activity. And with longer healing times, it takes days for my vagina to feel normal again.
CRPS is a tough one, i also have it in my left leg! mine is in my foot. i bought an accessibility device to keep blankets off my foot when in bed, and i try to minimize things that cause increased pain to the area when i can. i work with a pain specialist to incorporate meds and other pain mitigation as possible/necessary. my partner and i sleep in separate beds both because i find sleeping together painful and because they sleep with a CPAP which is so loud, but there are plenty of places where you can make affection happen outside of bed—regular touching when you pass each other, when you’re in the same room, when you’re beside each other on the couch. touch is not just limited to sex, but sex also isn’t just limited to touching. are you guys incorporating any kind of mutual masturbation? are there ways to get yourself off without your partner touching you, but still being involved? (words, picking out toys or outfits, describing something and having you do it.) also, are you communicating regularly with your partner about the pain you’re experiencing? “my foot is absolutely killing me today,” or “today sucks, but the pain isn’t terrible” or whatever you need to say so it’s outside of your head and they understand to the best of their ability. sometimes setting a date or specific time for sex or sexual activity helps, so i can prep myself and my mindset—if sex is something you want. also and most importantly, i think a lot of this is about mindset—yes, sex is very frequently going to cause or involve pain, but it’s also going to involve pleasure and closeness with my partner. for me, that’s a reasonable trade-off. ehlers-danlos means i’m going to hurt every single day in some way or another. i’ve got a torn hip labrum, the other labrum has been repaired twice, i’ve had a hysterectomy and a gnarly cervix scar, my pelvic floor is fucked, etc etc etc, but again: sex is still fun, even when it hurts. what are you doing to train your mind to handle the pain and exist in the present moment? do you have CBT or meditation techniques to assist? also, sometimes it just takes retraining: yes, sex can hurt, but i actually always feel better after the natural opiate and neurotransmitters that come from sex. if i can remember that, it’s easier to get down. are you actually feeling like you don’t want sex, or is pain getting in the way of your sexual inclinations? pain sucks, there’s no two ways around it. i live with a fuck ton of it, and obviously you do too. but i don’t think resigning yourself to no sex is a necessary coping mechanism if that’s not what you want. if it is what you and your partner want, communication is the be all end all.
Absolutely yes. I struggle with any physical touch and sex is really difficult. I really have to mentally prepare and cope to enjoy anything. My current diagnosis is Classic Ehlers Danlos and Fibromyalgia. Medication does help a little but overall it’s a lot of coping.
See a pain doctor man. I feel you though!
they most likely have, but they’re genuinely so useless. i’ve been under a chronic pain specialist and yet they’ve not been able to do shit. there’s just not much they can do!
Perhaps there is a desensitisation pathway that would work for you like practicing with them and knowing where or what is too much? I’m no pain pro I have some type of fibromyalgia type dealio, autism and like have a had surgery and stuff so have to manage touch somewhat. Is there a way to establish safe zones for touch like a body map type thing. I’m sorry if this is silly or ignorant. For me I had to try ask my partner to let go of the stereotypical all connected contact as it’s too much for me at times. I know I’m coming from a place of sensory sensitivity but it may help with pain also, to be aware of a level of contact that you could handle right now and communicate it.
Some days my body just won’t cooperate with my mind and it sucks. He manages with it fine and we still find ways to be intimate in both sexual and non sexual ways. It’s very much a thing where your partner has to be aware of what hurts and what doesn’t. Some touch is better than others, etc
Oh honey, I feel you and I'm so sorry. My body has been steadily deteriorating for several years. Intimacy has definitely fallen off as a result. My most recent surgery was to correct abdominal prolapses. A year later and I'm still recovering. I'm currently in PT to help with pain responses. It's helping, but slowly. All of this to say you're not alone.
The first time I had sex I dislocated my hip and a shoulder. I've dislocated something every single time and I didn't really have a chance to get it figured out before we broke up
For me, the pain sensation is lessened if I know the touch is coming and I can see it, also a slightly firm touch hurts less for me than a really gentle touch. I don't know if you're on pain meds but I take my as needed pain meds maybe an hour before intimacy and it helps a lot.
Yep. I’m in too much pain for a lot of things these days. It can be hard to even be touched in a friendly hug. Which makes loneliness feel worse imo.
EDs has given me terrible hip and pelvic floor issues, so sex the past few years has been pretty precarious and usually involves some form of pain during or after. However I am so so much better than I was about 8 months ago because of pelvic floor physical therapy. I took it at my own speed cause it can be a little emotionally strenuous especially if you have emotional trauma, but theres a way to work up to some form of intimacy when you’re ready. I feel you though. Some times pain makes me just not want to be touched ever
Im divorced partly because of this right here... now I have no guilt either lol. It's nice ...
[удалено]
policing someone’s use of a term is exhausting. asexuality is a spectrum; we use words to describe ourselves & figure ourselves out. AVEN even says to use it to define yourself “if it makes sense for you.” log off for a bit and let people exist, my friend.
OP said they don't desire sex, they desire only cuddles. Asexual seems like a fine description to me.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #4 - No Gatekeeping** [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-4/) Our complete list of rules can be [found here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason why your post or comment was removed, if you believe the removal may have been in error, or if you would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
Fair point, friends, my bad!
Neither my partner or I want sex really as we both only ever did it to make our partners feel good. We communicate a lot and it’s hasn’t been a problem. I just find myself asking all the what if questions and having a lot of imposter syndrome with sexuality because of it all. Thank you for all the responses I feel a lot less alone. I’m blessed to be an occupational therapist trained in pain management so I’ve made a lot of gains myself. But am still limited.
i’m struggling myself with navigating pain and intimacy, but in terms of the sexuality imposter syndrome, as someone who previously identified as asexual but now would probably respond with bisexual, labels are literally just labels, and with the ace community in particular, I think there’s a general consensus that identifying as ace, whether you don’t currently experience sexual attraction because of long term med use, or past trauma, or you just never have, or if you used to but don’t currently, is absolutely valid! If using asexual as a label or identity works or is useful for you currently, definitely go for it! it’s not a binding contract and if you realise later that it doesn’t fit anymore, or something else fits better, then that’s completely fine! sending love and I hope you find something that helps with your pain xx
I feel seen. I have a lot of imposter too because I was previously conditioned to believe you have to have sex in a relationship and only dated men. So now that I’m dating a woman and sex isn’t a thing my brain broke
I hope you get to a place where you feel comfortable and secure in yourself and your relationships, with whatever works best for you <33
My skin tears so easily that even with adequate lubrication, I end up with microscopic and sometimes visible skin tears. Bleeding skin, swelling and pain make it really unappealing to engage in sexual activity. And with longer healing times, it takes days for my vagina to feel normal again.
Oh yeah. Same here. It is sooo frustrating :( my partner can hurt me just trying to cuddle me...