EDS is ruining my sex life.

by Veronica on June 2, 2009

in Ehlers Danlos Syndrome

Dear Ehlers Danlos Syndrome,

Seriously, you’re fucking up my sex life. I mean, I know complaining isn’t going to change anything and it’s not exactly like you can tone it down for me, but I’d like you to know that some things? They aren’t exactly ideal at the moment.

I can’t have sex because my hips flick in and out of joint, leaving me either screaming (and not the good kind of screaming either) or limping for days.

I can’t masturbate because my skin tears and there are only so many vibrator induced orgasms one person can have before they’d like something a little different to be happening down there.

And finally, I can’t give blow jobs because my jaw clicks out too.

Nathan is very unhappy.

So am I.

The least you could do would be to give me spontaneous orgasms. That way I’d be completely satisfied and could tell Nathan to deal with it completely guilt free.

Or something.



Tanya June 2, 2009 at 10:16 pm

I come home from the hospital, havent seen my computer in days and I can still rely on you talking about sex 😉

Seriously though….how frustrating. I wouldnt even begin to try and give advice.

Tanyas last blog post..A little ray of sunshine….

Marylin June 2, 2009 at 10:43 pm

Ohh FUCK… that really sucks. Or, eh.. not? Sorry!!

I wish I could find some sort of miracle cure for you honey! ((hugs))

Marylins last blog post..Photohunt: Books

Sharnee June 2, 2009 at 11:04 pm

Awww, that’s crappy. Sorry to hear this (especially the “skin tearing” bit…. owch!). Imagine those poor people who have orgasms they cannot control. That too would be annoying – well, assuming you were at the Supermarket or something.

ps: we should totally meet for coffee sometime! I often go to tas to visit family but we always go to Hobart.

Sharnees last blog post..sharing

Hyphen Mama June 2, 2009 at 11:49 pm

I’ve got nothin’! Sorry.

Hyphen Mamas last blog post..There’s no place like home….

Robin G. June 3, 2009 at 12:25 am

Wine? So that at least during, you aren’t noticing the pain as much?

This sucks, honestly. Or, rather… it kind of doesn’t, which is the point.

Robin G.s last blog post..Up

C June 3, 2009 at 12:44 am

Oh, Veronica! Sorry to hear about the EDS. That just sucks.

I do have to thank you though. Before you mentioned EDS on your blog, I had never heard of it.

Cs last blog post..This Can Save Your Child’s Life

Joyce-Anne June 3, 2009 at 1:41 am

Sorry to hear this. It sucks. :(

Joyce-Annes last blog post..A Friday Haiku

Taz June 3, 2009 at 1:46 am

not sounding good..

i hope it settles down soon..

thinking of ya..

Xbox4NappyRash June 3, 2009 at 3:41 am

Poor Nathan can’t catch a break eh…

Xbox4NappyRashs last blog post..Feline literature from Guantanamo

Jeanette June 3, 2009 at 5:14 am

Hectic!! Isn’t there anything that’ll solve your problem?

Jeanettes last blog post..Dry Winter Landscapes

achelois June 3, 2009 at 9:19 am

Oh Veronica – totally relate having EDS too but you know that already.. pillows and yes more pillows, strong hands to literally hold your hips straight and in sockets (his hands preferably!)

sorry for the details but on the suck issues – use your tongue endearingly and slowly, then tantalisingly suggest he returns the favour, he’ll soon forget what it was that you were supposed to have been doing.
All I can think of I am afraid apart from loads of alchohol!! Not always the best option I know but if you drink enough you may not remember the pain… take care

Jayne June 3, 2009 at 10:18 am

Nup, I got nuthin’.

Jaynes last blog post..When Mums should just not try to explain…..June 3

Ree June 3, 2009 at 10:44 am

That’s about 17,000 kinds of wrong.

Rees last blog post..The Rules According to The Hotfessional

Michelle June 3, 2009 at 3:45 pm

Ouch… being relatively new to your blog, this is the first time I have heard of EDS and I just googled it… Ouch.
How bout in a pool or bath where you are both weightless? I’m totally clueless… just a thought!

Michelles last blog post..Babes that go “bark” in the night.

Sharon June 3, 2009 at 3:55 pm

One of those elasticised corsets to hold your hips in place? Mind you I don’t know if you can still buy them anywhere….

river June 3, 2009 at 4:27 pm

Hey Sharon, what are you doing in my head? Ha Ha
I was going to suggest that maybe you could wear that belly support thingy that you had while you were still pregnant. Just tighten it a little to hold your hips in place. Worth a try? Then there’s achelois tongue suggestion..

Barbara June 7, 2009 at 2:28 am

Oh love, I am sorry. It’s all rotten. I’m too brain dead at the moment to come up with a sensible or even amusing solution I’m afraid. I’ll think on it and let you know.

Barbaras last blog post..A Holiday

Kali June 7, 2009 at 3:15 pm

Has anyone ever tried putting you in a sacro-iliac support belt? I’ve heard that one of those can keep your hips set properly (from EDSers with worse hip trouble than mine).

It does screw with just about anything you want to do, though, doesn’t it?


Kalis last blog post..A day in the life

Rex June 16, 2009 at 12:43 am

Totally hear ya on this. Bad hips, check (fully dislocated the left one over Easter after a car crash … not fun). Dodgy jaw, check. My problem with masturbation isn’t so much the skin tearing (thankfully, the skin problems seem to have mostly gone to my Mother Unit and Evil Younger Sibling and skipped me aside from the keloid scarring and big bad bruises), but the arthritis in my wrists/hands/fingers. Which also makes manually stimulating my fiance a problem. Sigh. Makes you almost want to give up sometimes, doesn’t it?

Rexs last blog post..PSA

Pia June 16, 2009 at 3:24 am

not good, not good, not good.

Grumpy daddy. Grumpy mummy.

not good… *shakes head*

praying for some spontaneous orgasms for you. fingers and toes crossed.

Pias last blog post..My lens has a mind of its own…

Deanna August 30, 2009 at 9:34 pm

I have Ehlers-Danlos Syndrome also. IT SUCKS!!! For your dislocating hips have you tried something like spandex shorts (picture bicycle shorts) only with the crotch cut out? Not sure if it will help enough, but it just might! Also be sure to use huge amounts of a lubricant (ie. k-y Jelly) to help prevent skin tears.

Deanna August 31, 2009 at 12:01 pm

If your skin isn’t too sensitive try using your hair conditioner as a lubricant.For me blow jobs are all about the angle. If he pushes down on my tongue or lower jaw it’ll dislocate. If I’m positioned so that my mouth is level with his belly button it seems to help. A lot! It seems to place everything at more of a natural entry angle. When that’s too much for me my guy is happy to get just his head sucked and the rest “licked like an ice cream cone.” Pay special attention to the base of his head.

BubbleGirl September 16, 2009 at 1:58 am

For me the worst is when my hubby asks me to give him a hand job, cus I’m usually lying on my right side, so I can only reach with my left (ie: BAD) arm, so the shoulder dislocates, and it’s like, fine I’ll just give you head… and like 30 seconds later, the jaw dislocates… So then it’s… FINE, let’s just have sex already, then *POP* there goes the hip (and usually a few ribs). Then I whimper for a minute, and we both roll over and go to bed.

Kristin January 4, 2010 at 12:35 pm

You have some seriously creative friends. I hope some of this helped.

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