Ehlers-Danlos Syndrome and Pelvic Floor Dysfunction

The Ehlers-Danlos Syndromes (EDS) and other hypermobility spectrum disorders are a group of connective tissue disorders that can affect people’s skin, joints, and blood vessel.  Connective tissue is what provides the support to underlying structures of our body - like muscles, organs, and joints.

It is a genetic disorder that is divided into 13 subtypes. 

Dependent on the type, you might experience:  Skin hyper extensibility, generalized joint hyper mobility, atrophic scarring, skin discoloration, cardiac problems, vascular issues that can interfere with pregnancy, and joint dislocations.

1/5000 people have EDS, but most have people are misdiagnosed and treated before getting a successful diagnosis.  It seems that most people with EDS are not taken seriously in the medical system, even though it has so many underlying affects on their quality of life and ability to function.

In the pelvic floor realm, there are not a lot of studies looking at correlation between EDS and pelvic floor dysfunction.  However, we can’t help but notice that this population makes up a large portion of the people that we see.  And because of this, it is important that PT’s and clinicians truly understand the possible associated issues that may come along with treating patient’s with EDS.

A systematic review was done looking at the current literature in regards to this, and found that there may be higher incidence of (Gilliam et al, 2020):

- Bladder diverticula

- Bladder urgency and incontinence

- Bladder outlet obstruction

- Recurrent Urinary Tract Infections

- Bladder Pain

- Hematuria

- Urinary Retention

- Voiding Dysfunction

- Severe Pelvic Organ Prolapse

- Painful Intercourse

- Menstrual Complications

- PCOS

- Endometriosis

- Infertility

- Genital Mucosa edema and laceration tendencies

- Vulvodynia

- Vestibulodynia

- Obstetric post-partum hemorrhage

Professionally,  we see these correlations all of the time with EDS patients. 

It is important that these patients have a team approach to address these side effects - nutritionist, PCP, gynecologist, and psychical therapists.  And all of these practitioners need to fully believe their patients, and be understanding of how to truly to treat these conditions.

If you are someone who has any type of hyper mobility, make sure that you find a PT who understands how to help you access your deep core muscles, and figure out how to break patterns developed that stress your joints more than necessary.  You want someone that doesn’t just throw generic exercises at you without monitoring your technique.

As well, if you have any of the above listed conditions; then you particularly need to see a pelvic floor therapists.  Very commonly, we see patients with hyper mobility issues that come in with pelvic pain and/or pain with intercourse.  We have seen that due to the external musculature not being able to stabilize the pelvis sufficiently, the pelvic floor starts to work harder and harder to take up the slack.  It starts to get so tight, that it eventually cannot relax for normal function like intercourse, bowel/bladder habits, and the movement required for ambulation.  We can successfully treat this by very intentionally strengthening muscles of core and hips, while providing soft tissue/therapeutic exercises that down train the pelvic floor.

Next, we commonly see that there are so many of our clients that come in with pain with menstruation, signs of endometriosis, and fertility issues.  Personally, the therapists at MethodPT love working with this population, because it seems that we can help make such significant changes for the better.  Again, it comes down to balancing the musculoskeletal system; and doing Myofascial work for the pelvic floor and abdomen.  We recently got to work with a 14 year old girl, with EDS, who had severe pain during her periods.  She would be out of commission for 2-3 days, missing school, and having heavy bleeding.  After just TWO sessions, she reported she had minimal pain during her cycle and was able to compete in her softball tournament with no disturbances.  Often time, you just need seem with experience working with you, and you’ll see quick changes.

These are just a few examples, of why people with hyper mobility issues should have an experienced pelvic floor therapist as part of their team. If you have a child/teen with any of these symptoms, the sooner they start getting treatment and education on proper movements strategies, the better their quality of life will be down the road.

Please reach out to us today, if you have any questions, or want to schedule an appointment.

Gilliam, Elizabeth, et al. “Urogenital and Pelvic Complications in the Ehlers-Danlos Syndromes and Associated Hypermobility Spectrum Disorders: A Scoping Review.” Clinical Genetics, vol. 97, no. 1, 1 Jan. 2020, pp. 168–178, www.ncbi.nlm.nih.gov/pmc/articles/PMC6917879/, 10.1111/cge.13624.

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