Ehlers Danlos Syndrome: Facts, Information and Myths Busted

In Pelvic Floor Physical Therapy by Elizabeth Akincilar2 Comments

By Elizabeth Akincilar, MSPT, Cofounder, PHRC Merrimack


Ehlers Danlos Syndrome is a rare inherited connective tissue disorder. It affects the skin, joints, and blood vessel walls.

It causes joint hypermobility (joints that move too much!) which can result in joint dysfunction and pain. If many joints are affected, it can cause muscle dysfunction throughout the body, as the muscles attempt to compensate for the lack of joint stability. This can result in body-wide myofascial pain. When the sacroiliac joints or hip joints are affected, the pelvic floor muscles can become dysfunctional resulting in pelvic pain, and/or urinary, bowel and/or sexual dysfunction.

The current classification includes 13 types of Ehlers-Danlos syndrome:

  1. Arthrochalasia EDS
  2. Brittle Cornea Syndrome
  3. Cardiac-valvular EDS
  4. Classical EDS 
  5. Classical-like EDS
  6. Dermatosparaxis EDS
  7. Hypermobile EDS 
  8. Kyphoscoliotic EDS 
  9. Musculocontractural EDS⁠
  10. Myopathic EDS⁠
  11. Periodontal EDS⁠
  12. Spondylodysplastic EDS⁠
  13. Vascular Ehlers-Danlos Syndrome⁠


EDS is often misunderstood; to help break down the confusion, let’s review some myths busted by the Ehlers Danlos Society

“Myth #1: The Ehlers-Danlos syndromes are ‘just stretchy skin.’


Reality: The Ehlers-Danlos syndromes are a group of hereditary disorders of connective tissue. Connective tissue is found all over the body, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on.”


“Myth #2: EDS and HSD is ‘just being a bit bendy.’


Reality: Much more than ‘just’ hypermobility, people with EDS and HSD experience joint instability (subluxations and/or dislocations) and reduced position sense (proprioception) with an increased risk of injury to the tissues around joints and the surface of joints.”


“Myth #3: Hypermobile EDS (hEDS) is more severe than hypermobility spectrum disorder (HSD).


Reality: HSD, just like hEDS and rarer types of EDS, can have significant effects on a person’s health, whether this is related to their joints or to comorbidities. Among the most common of these concerns are nausea, vomiting, acid reflux, bloating, pain, absorption, and food intolerance concerns; autonomic disturbances of heart rate and blood pressure, bowel and bladder function, and temperature regulation; anxiety, depression, and phobias; and organ / systemic inflammation related to mast cell activation. These associations are very real. They seriously affect quality of life, and they need to be managed. These additional problems need to be evaluated and treated when an HSD is diagnosed.”


“Myth #4: Hypermobile EDS (hEDS) is diagnosed by genetic testing.


Reality: The genetic variant(s) that causes hEDS has not yet been identified. All other types of EDS have known genetic causes and can be confirmed through genetic testing. A diagnosis of hEDS is made clinically using the 2017 diagnostic criteria. There is no genetic test yet for hEDS.”


“Myth #5: There is no treatment for EDS or HSD.


Reality: There are many ways in which the symptoms and complications of EDS and HSD are treated. Often doctors and therapists will use many of the same treatments that are available for other pain disorders, and adapt them e.g., as done in physical therapy.”


This is the reality of EDS. It is a syndrome that can cause overall total body pain; it is much more than hypermobility. It is considered ‘rare’ as there are fewer than 200,000 US cases per year. While seen as rare, it still affects the day to day lives of those living with EDS. If you are one of those, see below for resources from the Ehlers Danlos Society.


EDS Specific Resources


Ehlers Danlos Society



Are you unable to come see us in person in the Bay Area, Southern California or New England?  We offer virtual physical therapy appointments too!

Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.

In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page

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What are pelvic floor muscles?

The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.

What is pelvic floor physical therapy?

Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.

What happens at pelvic floor therapy?

During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.

What is pudendal neuralgia and how is it treated?

Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.

Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.

What is interstitial cystitis and how is it treated?

Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.

Who is the Pelvic Health and Rehabilitation Team?

The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.

How many years of experience do we have?

Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.

Why PHRC versus anyone else?

PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.

Do we treat men for pelvic floor therapy?

The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.

Do I need pelvic floor therapy forever?

The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.


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