hEDS and intimacy : I feel like this... - Ehlers-Danlos Sup...

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hEDS and intimacy

Aurora20 profile image
3 Replies

I feel like this not a topic that people really talk about but I would be interested to hear how hEDS affects sex life/intimacy. It has always been painful for me not sure if it’s the endometriosis or if Eds causes this too? But as I’m getting older after intimacy I get flare ups, pain everywhere in the body especially in the pelvic area. Just wanted to know if anyone else got these symptoms? x

3 Replies
Mnemosyne profile image
Mnemosyne

Hi Aurora20, I've always had the same issues - pelvic pain during and after penetration, difficulty arranging my limbs for comfort during intimacy, and terrible hormone-related flare-ups of inflammation when I'm premenstrual. I also have endo, and though the Mirena coil has reduced the pain and heavy flow of my periods a lot, it's turned my PMS into PMDD and made the inflammatory effects way worse - bit of a Catch22!

It kinda sucks, because sex is supposed to be fun! Bah :-(

Aurora20 profile image
Aurora20 in reply to Mnemosyne

Thank you for your reply! It’s a pain isn’t it, every time I just dread what symptoms will it be this time round! It is supposed to be fun and I try to think of things instead of penetration but my partner only want wants penetration, I’m not really that honest with him about how I feel because I’m worried it will put him off as he will be worried to put me though pain

Mnemosyne profile image
Mnemosyne in reply to Aurora20

Eek, I think it's definitely worth having an honest convo about the pain - I'm sure if he really cares about you and values your relationship, he would rather do things that are fun for you *both* and not cause you pain, even if it means accepting that the script for your intimate encounters might need to change a bit. There's a lot of fun to be had without PIV for all involved, and exploring that together could strengthen your bond

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