Saturday, June 19, 2010

Sexuality, Ehlers-Danlos Syndrome, and Me

Okay, normally I'd put this post on my regular blog but I don't want to make that one Adult. So, there won't be a lot of kink content here. If you've come here from a search, be warned there may be some content that's quite graphic and kinky.
What follows is an explanation/list of how my EDS changes my sex life. Each person with EDS is different so all these things might not happen to everyone and something might happen to you that doesn't happen to me.
I've learned that orgasm is the best possible muscle relaxer for me. While it isn't guaranteed to work for me, it won't make me worse the way things like Flexaril will. So, I like to try to have an orgasm when my muscles are really bothering me. I still like sex despite the problems listed here.
Sex with EDS can be tricky. I'm lucky in that most of my skin is more prone to stretch than to tear. However skin associated with mucus membranes, like that of my vulva, is much more likely to tear. It doesn't take rough monkey sex for tearing to happen either. Usually, after sex I'll have to be very careful to lean forward to pee for about a week until I'm all healed up.
Even prior to orgasm sex or masturbation tends to be a fun and relaxing activity. This means that subluxations and dislocations are more likely. Combine that with the athleticism that is involved in even the missionary position are you have a recipe for problems. There are some sexual positions that do not involve spread legs even for a death fat woman but I haven't mastered them.
Many companies make positioning aids including firm foam furniture and assist straps. I haven't tried any of the specialty products because most are out of my price range or I'm just not sure whatever will work for two death fat people with disabilities. (If you'd be interested in having people like us test/review your product then please leave a comment or email me.)
Just to be clear, unplanned subluxations and dislocations do not count as Good Pain in my book. Unplanned labia tears that make it hard to pee don't count either. Although, I gladly deal with them. However, I'd be much happier if I could find a way to avoid these things.
I sometimes find vaginal penetration painful. Now this could be caused by my endometriosis or ovarian cysts but both are being well managed at the moment. So, my guess is that it is being caused by my uterus or other pelvic organs prolapsing, yet another aspect of EDS. (I'm trying pelvic floor exercises with Smartballs to help with this and minor stress incontinence.)
For fellatio, I have problems with my jaw. If I open my jaw too far it can pop out. My neck is highly unstable and movement can trigger headaches, nausea, dizziness, and muscle spasms. So, I have to be very careful. I doubt that my horrid gag reflex is related to my EDS.
Anal play can also be difficult. EDS can cause constipation or other GI distress. GI problems so bad that a complete clean out isn't possible. The problems with collagen can lead to hemorrhoids or tears that can get in the way or cause pain. If I relax enough to make anal sex possible then my hips have lost any concept of 'located'.
Digital stimulation can also be complicated by EDS. I first dislocated my right thumb during a weekend in bed with my girlfriend at the time. Stopping to put small joints back in place will break a rhythm but doesn't take long. I don't have good hand strength, my gross motor is iffy, but my fine motor is comparatively good. This seems to vary from person to person. Also wearing splinting during sex can be awkward, messy, or lead to injuring your partner with hard plastic edges.
Another thing about EDS is the mark-ability factor. If I have a doctor's appointment coming up I basically have to skip activities for about a week so I won't show up with hickeys or other weird marks that might get someone called because the doctor suspects some form of abuse.
After orgasm I'm experiencing sharp low pelvic pain. It may be caused by movement of the pubic bone or pubic synthesis. This is a definite disincentive from orgasm.
Now, I don't only engage in partnered fun. Masturbation is fun and relaxing. However I don't lubricate well so I need lube even for external stimulation with a vibrator. Also, I can have trouble holding onto a vibrator. Self-digital stimulation is out due to my bendy fingers.
I feel like I'm painting a pretty bleak picture. In a way, I am. However, there is enjoyment. Sex still serves as a way to foster connection. Overall, it's still worth having. Gradually we may rely more and more on power exchange, sensation play, and other forms of ‘kinky’ fun. I'm glad to have the options.


  1. Came from twitter, via an EDS hashtag search.

    Yes. Oh god yes. I love sex, but my word, having sex with EDS is insanely hard - I think the tearing bothers me the most and the worry that I'll relax enough and have a major dislocation and be in serious trouble. Although - I have had a couple of orgasms that made me so relaxed all my ribs popped out. That wasn't fun.

  2. I have never heard of EDS, had to google it for more info. Although I don't think EDS is the cause of my problems, I do have a similar issue with tearing during sex. I call it "split" because it feels like my labia was split right down the middle, from the clit to the vaginal opening. Usually happens a few times a year, and takes a couple weeks to heal - and I have to do the same careful positioning to pee afterward.

    I was reading what you wrote and thinking "Oh, wow, she could be talking about me". Weird!