Hypermobility, EDS, and H-EDS are often a global condition, impacting the major joints, the GI system, cognitive aspects, the vascular system. What I find most people miss in the conversation is a frank and honest conversation about sex and sexuality, and even the menustral cycle. So, in this post today, I'm going to answer some of the common questions I get about the pelvic floor and menustration as it relates to EDS.
How common is chronic pain in the pelvis or vulva during sex for people with EDS? And how does this affect them?
- Chronic pain in the pelvis is more likely to be reported by folks with hypermobility, with a range of 4 to 7 times as often compared to their collagen typical peers. This includes individuals across sexes and genders, folks who've delivered children and those who haven't. 1 in 4 individuals with hypermobile-EDS will report consistent pelvic pain during their lifetime.(1) Folks with hypermobility also tend to report a higher frequency of painful intercourse in an online survey, where 77% of individuals admitted to pain with sex, highlighting just how common it is (2)
Not only are hypermobile individuals more likely to have pelvic pain, anywhere from 4-7x their peers, up to 2rds of folks with hypermobility will experience pain with sex. Let me be clear; it might be common to have pain with sex, but it's not normal. Unless the pain is intentional in the context of kink or BDSM, sex shouldn't be painful and isn't something you have to live with.
This increased frequency of pain and discomfort has a number of impacts. Sex and sexual gratification are a normal part of being human, and for many people, a key part of contentment and satisfying relationships with others. Having increased pain can make folks with EDS feel more shame around their sex life, feelings of inadequacy, and can prompt folks to feel less confident and comfortable initiating sex, or enjoying the sex they're having.
Is joint dislocation during sex another common symptom?
The literature is scarce on joint dislocation during sex; it's hard enough to get people to talk to their physicians, let alone about their sex lives. However, in working with my clients, I've found that pain is much more likely to be reported during sex, not just with intercourse and penetration, but with positioning itself.
What's brilliant is that most folks with hypermobility know how to adjust to protect their bodies. More commonly, I have people come to me reporting they feel pain and like they "might" dislocate, so we work on strengthening that specific joint.
Do people with EDS experience exaggerated hormonal fluctuations and can this affect their sex life?
Individuals with EDS do not seem to have higher levels of sex hormones (estrogen, testosterone), but instead seem to be more sensitive to fluctuations in these hormones. In female and estrogen based bodies, estrogen has a strong impact on tissue laxity and strength, which might be why women, female bodied, and estrogen based bodies are 3-4x more likely to be diagnosed with EDS. Estrogen is also responsible for moisturization of the tissue in the pelvis, ad it's fluctuations means folks with EDS are more likely to report vaginal dryness than their peers, which can then lead to more discomfort, tearing, and so forth.(3)
Why do some people with EDS have weaker orgasms?
I wouldn't say they do. I would actually argue that folks with EDS have the same capacity to achieve wonderful, powerful, and pleasurable orgasms as any human, but that the complications of pelvic pain, joint pain, the cognitive load of tracking your body can put inhibitors in the way, or brakes on the system.
Emily Nagoski of "Come As Your Are" describe an orgasm as a concert of birds, all flying in one direction.4 You need the majority of the flock flying in the same direction to enjoy an orgasm, but if you have a few birds flying in the direction of "pelvic pain," a few others around "general pain," and "Fear of dislocation," or "anxiety about sex because of pain," then fewer of the flock is flying towards pleasure, and that can reduce your experience of orgasm, or even prevent it from happening.
Why does my sex drive sometimes go down?
Sex drive comes from a number of factors; how stressed are we at work, how good to we feel in our relationships, about ourselves, and of course, a hormonal component. If we consider that folks with EDS are more likely to experience pain, that can make us less inclined to lean towards sex not only because the sex itself might be painful, but how randy are you going to be if your shoulder is aching, and so is your back, and your shoulder? There's simply other things to worry about. And, pleasure and sexuality requires a fundamental level of safety and security to appropriately enjoy it, and pain can directly communicate the opposite of safety. Secondly, we might not feel very sexy in our bodies, or even worse, feel ashamed.
I know so many individuals with EDS who feel ashamed of their bodies, or themselves, because they might have more accessibility needs, or can't "do" some of the things their peers can. Some many folks with hypermobility and EDS dissociate from their body, because there is simply so much happening, so much input, and so much of it can be uncomfortable, so dissociating is a strategy to manage. And if you dissociate from your body, you're also dissociating from it's ability to experience pleasure. Lastly, estrogen plays a role in the sex drive, and if folks with EDS are more sensitive to estrogen, they're more sensitive to it's dips, and likely to have a dip in sex drive at the same time.
Do people with EDS often have a complicated relationship with sex?
I think I spoke to some of this above, but absolutely. I think everyone has their own relationship with sex, and complicated in its own way. Having EDS changes what those complications can be, and maybe add a few more, but to say they're the only group with a complicated relationship with sex is wrong.
Why might your menstrual cycle be more painful with EDS?
80% of pubescent and teenagers with EDS reported dysmenorrhea, and 50% of them reported heavy bleeding, compared to 20% in the general population. Another study found that 76% of adult reported heavy bleeding, and that this number stayed relatively constant across age groups.5 Because ehlers danlos and hypermobility are reflections of a collagen variation, there are symptoms at the collagen level, including in our vascular tissue. Folks with collagen variations and EDS were found to be far more (25x) likely to also have bleeding and clotting issues.6 Additionally, menstruation might be more painful because again, the increased sensitivity to estrogen, as well as the increased tissue laxity. Many folks with EDS utilizing hormonal both control to help regulate their hormone cycle and reduce or even get rid of their periods to address this pain.
What's important to note is that many folks with EDS might be mistakenly diagnosed with endometriosis because of the heavy bleeding and painful periods, and be recommended for hysterectomies or other surgeries. The rate of Endometriosis is the same as the general population (2-6%), so it's incredibly important to get an accurate differential diagnosis.
If you've got any other questions, send them on my way and I'll include them in my next post!