The Connection Between Ehlers-Danlos Syndrome and Dyspareunia

Ehlers-Danlos Syndrome (difficult to pronounce, easier to refer to as EDS!) is a group of disorders that "affect your connective tissues - primarily your skin, joints and blood vessel walls" (Mayo Clinic, n.d.). This can look like someone having very flexible joints (think of someone able to bend their wrist all the way back or bending down to touch the floor with the palms of their hands without needing to bend their knees to do so). Other people may say they have 'double jointed' hands or elbows. This can also present with very stretchy skin that can be fragile.

The consequences of that stretchiness can be in the form of increased risk of injury, difficulty healing around an incision if it requires stitches to close, and pain. Sometimes lots and lots of pain that spans into years. Diagnosing EDS may be difficult as within the grouping for EDS, there is vascular EDS and hypermobility spectrum disorders. Though for some people, "extremely loose joints, fragile or stretchy skin, and a family history of Ehlers-Danlos syndrome are often enough to make a diagnosis" (Mayo Clinic, n.d.). Some forms of EDS can be diagnosed through a genetic test. There is no genetic test currently to diagnose hypermobile EDS.

There are common comorbidities that occur in someone who has EDS. Per Glayzer et al., 2021, those were:

• irritable bowel syndrome

• fibromyalgia

• TMJ dysfunction

• migraines

• interstitial cystitis (also known as overactive bladder)

• most cell activation syndrome

Many of my patients dealing with EDS have "all of the above," as a patient once put it. Along with these comorbidities, there is a high rate of dyspareunia, or painful intercourse, in patients who have EDS. A rate of 77% versus 20% in the global population of women who have EDS also have dyspareunia.

Other common conditions that were associated with dyspareunia were "vulvodynia, ovarian cysts, fibroids, abdominal and pelvic scars, and endometriosis" (Glayzer et al., 2021). This study found that younger women and older women had higher rates of dyspareunia compared to middle age women, which may be explained due to the "increased odds of vulvodynia in younger women (<48 years old) and the increased odds of atrophic vaginitis in postmenopausal women (>48 years old)" (Glayzer et al., 2021).

How does EDS play a role in dyspareunia?

That stretchy tissue and hypermobile joints can create pelvic instability, causing the pelvic floor muscles to tighten up in response. I like to tell my patients that if your body is 'loosey-goosey,' then your body is going to want stability somewhere to offset that imbalance. That 'stability' tends to come from the pelvic floor muscles, making them hypertonic or tight. Having tight muscles during intercourse did not bode well for the patient, as tight muscles can be a source of pain.

Among other possible causes for dyspareunia are, according to Ghaderi et al. (2019):

• pelvic floor injury during vaginal delivery

• pelvic inflammatory disease

• infection

• interstitial cystitis (overactive bladder)

• adhesions

• social violence/abuse

Psychosocial factors such as depression and anxiety may also be possible causes for someone having dyspareunia. So while it's entirely possible to have EDS with dyspareunia, it's also possible to have dyspareunia without having EDS at all.

Unfortunately, many women suffering from dyspareunia do not report their symptoms to their doctor. Within an online survey from Glayzer et al., results presented with 48% women self-reporting vulvodynia in those women who also had EDS, compared to the 8% prevalence of vulvodynia in the general population.

A positive screen for vulvodynia in this survey was a patient reporting dyspareunia and at least one of three other symptoms (vaginal pain with tampon insertion, pain/itching/burning with sitting, or pain/itching/burning with tight clothing).

When a patient from the study tried to report their symptoms, a lot of times they were not given the help they needed. Instead they were given these responses for the cause of pain:

• lack of desire (on the patient's end)

• psychological "it's all in your head"

• infidelity

• size of vaginal anatomy

• "pain is normal"

• or is outright dismissed

While dealing with dyspareunia is a challenge, it can be even more difficult if you also have EDS to contend with. However, it is doable, especially with a pelvic health physical therapist in your corner.

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References

Ghaderi, F., Bastani, P., Hajebrahimi, S., Jafarabadi, M. A., & Berghmans, B. (2019). Pelvic floor rehabilitation in the treatment of women with dyspareunia: a randomized controlled clinical trial. International urogynecology journal, 30(11), 1849–1855. https://doi.org/10.1007/s00192-019-04019-3

Glayzer, J. E., McFarlin, B. L., Castori, M., Suarez, M. L., Meinel, M. C., Kobak, W. H., Steffen, A. D., & Schlaeger, J. M. (2021). High rate of dyspareunia and probable vulvodynia in Ehlers-Danlos syndromes and hypermobility spectrum disorders: An online survey. American journal of medical genetics. Part C, Seminars in medical genetics, 187(4), 599–608. https://doi.org/10.1002/ajmg.c.31939

Glayzer, J., Suarez, M., Meinel, M., Kobak, W.H., Schlaeger, J.M. (n.d.). Dyspareunia and Vulvodynia in Women with Ehlers-Danlos Syndrome: An Online Survey. Poster Number 015. Scientific Abstract. Oral Presentation, Session 5. https://ehlers-danlos.com/wp-content/uploads/2020/09/Poster-015-FINAL-EDS-ECHO-SUMMIT-Oct-2020.pdf

Hugon-Rodin, J., Lebègue, G., Becourt, S., Hamonet, C., & Gompel, A. (2016). Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study. Orphanet journal of rare diseases, 11(1), 124. https://doi.org/10.1186/s13023-016-0511-2

Mayo Clinic. (n.d.). Ehlers-Danlos syndrome. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125