How Can You Have Sex With Ehlers-Danlos Syndrome?
Although it's a rare yet underdiagnosed genetic condition, Ehlers-Danlos syndrome (EDS) and its impacts highlight how full-body health is vital for a safe and pleasurable sex life.
"EDS is a disorder that affects connective tissue such as skin and joints—[and sometimes] one's blood vessels, uterus and intestines—and causes these organs to rupture," said Debra Laino, D.H.S., an AASECT-certified sex educator based in Wilmington, Delaware.
"EDS can lead to dyspareunia [painful intercourse] in both males and females because of swelling of the labia and a burning sensation on the external part of the vagina," she added. "In women, pelvic prolapse is a risk. Males and females are at risk for urinary incontinence, and for males, because of the pain, they can suffer from erectile dysfunction."
EDS is not what it seems
Pelvic floor strength is pivotal in both sexes. Without it, people can have weak orgasms, or a complete absence of them, and incontinence. Always remember, Kegel exercises aren't reserved for women; they're for anyone with a spare few minutes otherwise spent daydreaming.
Sexual educator Edwina Caito, based in Indiana, was diagnosed with EDS in 2021 following a lifetime of pain and misdiagnosis.
"I never thought my clumsiness and dislocated fingers and thumb sprains throughout childhood were at all related to an illness," Caito said. "Even my full pelvic organ prolapse in 2014 didn't clue me in. I thought my doctors had it handled with the fibromyalgia diagnosis. When I started seeing my symptoms mirroring my mom's and then my daughter, I knew it was more than just fibromyalgia."
A correct diagnosis can contextualize bodily phenomena in that what may have seemed like an uncomfortable reality could be a symptom to be managed. This potential confusion is compounded by the potentially open-ended nature of certain syndromes. Unlike many illnesses, Caito said EDS manifests in a number of ways.
"When you think 'connective tissue disorder,' you think it's in the muscles and tendons. However, EDS is a genetic collagen disorder, meaning everything in my body that is made up of collagen—skin, bones, organs and connective tissues—are affected," she said.
"And with it being a syndrome, there's no textbook description of symptoms," she added.
Sex while living with the syndrome
Laino had some advice for EDS sufferers, as well as anyone seeking a fulfilling sex life while dealing with chronic pain.
"For pain, natural lubricants are used, as well as aloe," Laino said. "Give yourself grace as you are working through these issues and know that sex doesn't define a person or a relationship. There are plenty of ways to be intimate; oral sex or just lying with each other naked can be wonderfully intimate acts."
Caito explained that her care for EDS extends to all areas of life, including when she needs to take it easy, even in the bedroom.
"Most importantly, I rest when I need to," she said. "If I push myself, I regret it with a flare from hell that will make me hurt from head to toe. It's extremely difficult to get over the guilt and feeling lazy. I have to constantly remind myself that I am sick and I need to take care of myself as needed."
Caito said her unique EDS experience directly impacts sexual activity.
"I personally have subluxing, meaning the joints pop out then back in and hurt like hell for days afterward," she said. "The physical symptoms are always made worse by sex, although the initial act can wipe current pain out. [During] my entire life, a great night of sex made me sore all over my body for days, along with brain fog. I always thought that was normal and [meant it was] just really good sex. I mean, I never thought to ask a friend, 'Hey, do you feel like you've been run over by a train every time you have sex?' Everything hurts, aches and feels bruised afterward. And until May 2021, I really believed this was normal."
Laino advocated for foreplay and preventive self-care as supplemental to medical treatment.
"Go slow and work into sex," she said. "Start off with loosening up the vagina with a finger and lube, and for both partners, patience is key. Massages are great to relax the muscles all over the body. Masturbation can also strengthen the pelvic floor. There are several yoga positions that can help with strengthening and flexibility as well, such as the butterfly position and the bridge position."
Caito explained the adjustments she has been able to make and how her partner has adapted to mindset shifts.
"He's a bit gentler with me now, and I am always aware of my joints and try not to stay in a taxing position for too long," Caito said. "Take doggy style, for instance: I alternate from hands and knees down to my elbows and back up. I will also move my legs into different positions so my knees aren't wiggling about as much. I use pillows to secure my body, too.
"But being in the sex and sex toy industry myself, I always have recommendations to people with EDS and other disabilities to help them enjoy sex in a safer manner, [like] a sex swing or sling, sex chairs and wedges," she added.
The most important takeaway is that pain during sex is not normal and you are never the problem. If your sexual partner denies either of those concepts, you're definitely better off sharing your bed with a sex toy instead.
