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Ehlers Danlos Syndrome & Pelvic Floor Physical Therapy in New York City

What is Ehlers Danlos Syndrome?
The Symptoms of Ehlers Danlos Syndrome
Constipation
Urinary Incontinence
Pelvic Floor Dysfunction
How Ehlers Danlos Syndrome Affects Your Pelvic Floor
Pelvic Floor Therapy
Pregnancy
Ehlers Danlos Syndrome & How I Can Help

What is Ehlers Danlos Syndrome?

Ehlers Danlos Syndrome is a group of hereditary connective tissue disorders that affects bones, organs, blood vessels, and the neurological system. There are 6 major types of Ehlers Danlos Syndromes; the most common type that affects the pelvic region is characterized by hypermobility (joint instability), and is also the most frequent Ehlers Danlos Syndrome treated in physical therapy.  Hypermobility is a reference to the broad range of movement within the joints, which can produce loose joints, resulting in complications like dislocation and chronic pain.

The Symptoms of Ehlers Danlos Syndrome Relating to the Pelvic Region:

  • Musculoskeletal complaints
  • Chronic pelvic pain
  • Joint instability
  • Soft tissue overuse injury
  • Musculoskeletal problems such as non-inflammatory joint pain
  • Spinal pain
  • Dislocation (complete or partial) of peripheral joints and central joints (including the hip)
  • Dyspareunia (pain when having sexual intercourse)
  • Dysmenorrhea (a painful menstrual cycle) loose connective tissue/muscle contractions
  • Weak muscles with increased tension and tone
  • Constipation and/or incontinence
  • Uterine, bladder or rectal prolapse
  • Short labor, postpartum hemorrhage and perineal wounds

The symptoms of Ehlers Danlos Syndrome are a result of either the poor tensile strength of the body’s collagen or alternatively the absence of sufficient amounts of structurally normal collagen.  Collagen is an essential tissue in creating and maintaining musculoskeletal health throughout the body, including the skin, muscles, ligaments, tendons, blood vessels.  This is why and how patients with Ehlers Danlos Syndrome commonly experience difficulty with stability of joints and vascular structures, along with chronic pain.  The pain can be debilitating and involve multiple joints at once and be accompanied by joint dislocations from even everyday movements or activities. 

An additional common symptom of Ehlers Danlos Syndrome is stretchy skin due to the collagen deficiency. Stretchy skin on the outside usually means stretchy tissues on the inside, so your supportive structures are not able to hold your organs up properly, increasing the risk of pelvic organ prolapse occurring.  A pelvic organ prolapse is characterized by a bulging or herniation of a pelvic organ (uterus, vagina, bowel, and bladder)  into or protruding from the vagina.  Pelvic organ prolapses can result when the muscles, ligaments and fascia (a thin casing of connective tissue) holding the pelvic organs in their proper place becomes weakened.  (click here to learn more about pelvic organ prolapses, symptoms and treatment).

Ehlers Danlos Syndrome & Constipation

People who have been diagnosed with Ehlers Danlos Syndrome may also experience bladder and bowel problems such as urge incontinence (sudden need to pass urine)  or intestinal dysmotility (a condition wherein digestive system muscles don’t contract as they should, changing the speed, strength or coordination of the digestive organs).

Be mindful, connective tissue surrounds and holds every organ, blood vessel, bone, nerve fiber and muscle throughout the entire body and that includes the bladder and bowel.  Problems with the bowel are actually more common than problems with the bladder – and this is particularly so with Ehlers-Danlos Syndrome. The healthy functioning of the body’s vascular systems and connective tissues determine the performance of peristalsis, which is the movement needed in the bowel to excrete waste through the rectum and anus. Any abnormalities in the connective tissues can disrupt bowel functioning and produce a motility disorder (lack of movement of waste)  and constipation.   If a pelvic organ prolapse has occurred, it can interfere with the ability to pass a bowel motion.  (click here to learn more about constipation, symptoms and treatment).

Ehlers Danlos Syndrome & Urinary Incontinence

With respect to the bladder, those coping  with Ehlers Danlos Syndrome commonly find themselves having difficulty with urinary retention, and their pelvic floor becomes hypertonic by working overtime (excessive tone and tension), desperately trying to stabilize the pelvis, lumbar spine, and hip joints. This also unfortunately often makes it difficult to have any control over your bladder, also affecting the urinary tract. Connective tissue in the bladder helps facilitate the movement needed to expel urine. When that tissue is abnormal it can disrupt the function resulting in bladder incontinence, overactive bladder, or bladder retention.(1) Dysfunction in connective tissues can also lead to uterine, vaginal or bladder prolapse that can cause bladder symptoms.(1)  Patients with Ehlers-Danlos Syndrome are more than twice as likely to develop urinary incontinence than those without Ehlers-Danlos Syndrome.(2). (click here to learn more about urinary incontinence, symptoms and treatment). 

In her book “A Guide to Living with Ehler’s Danlos Syndrome” Isobel Knight outlines how Ehlers-Danlos Syndrome does not just affect the connective tissue in the musculoskeletal system leading to joint instability, muscle tears, dislocations, and hip dysplasia, but Ehlers Danlos Syndrome can also affect the body’s systemic collagen leading to increased risk for endometriosis, POTS, Renauds, bladder problems, fibromyalgia, headaches, restless legs, asthma, constipation, bloatedness, prolapse, IBS symptoms, anxiety, depression and learning difficulties. (Isobel Knight notes the number of symptoms experienced can vary from one to several).

Ehlers Danlos Syndrome & Pelvic Floor Dysfunction

Generally speaking, those with Ehlers-Danlos Syndrome commonly experience pelvic pain felt in the lower abdomen, perineum (protecting the pelvic floor muscles and the blood vessels that supply the genitals and urinary tract) and is considered to be chronic if this pain has been lasting longer than 6 months. Along with this pelvic pain, there is frequently a musculoskeletal component such as poor posture, lack of flexibility or strength, core muscle weakness, sacroiliac joint (SIJ) pain, and often a return of pain from any past trauma or injury below the waist or involving the spine.   Though an array of pelvic floor dysfunctions is common with Ehlers Danlos Syndrome, those coping with this ailment can benefit from pelvic floor physical therapy.1

How Ehlers Danlos Syndrome Affects Your Pelvic Floor

Instability within our core and the structures that make up the pelvis can be enormously problematic  . The pelvis anatomy, along with a vital  collection of ligaments, are responsible for connecting the trunk of our body to our legs and supporting our weight.  As a result, walking, sitting, and lying down can be painful if we are coping with Ehlers Danlos Syndrome.  Working together with our other deep core muscles, the pelvic floor muscles have a leading role in maintaining the pressures in our abdominal cavity to create the stability needed to move our body.  The demands and physical stress we place onto our bodies require a dynamic system of pressure management and any weakness in the pelvic floor can cause pain and dysfunction throughout the body.   When any of the pelvic walls needed to stabilize us aren’t doing their job, it’s common to see the worst of the effects compromise the pelvic floor, which will tighten and become overused.  This can result in pelvic pain in sedentary positions, painful intercourse, obstructed bowel movements,  urinary leakage, and more.

With Ehlers-Danlos Syndrome, the issue of “muscle tightness” is common. This is largely due to how faulty and insufficient collagen makes the ligaments and tendons too weak to hold the bones and joints together properly. To compensate, the pelvic floor muscles are forced to work even harder, often causing muscles to spasm, which in turn makes them feel tight.  To counter and reduce the tightness, manual therapy, such as trigger point release, and stretching can usually relieve the pain. This can help muscles work more efficiently to hold the joints together while simultaneously reducing spasms.

Ehlers Danlos Syndrome & Pelvic Floor Therapy

Pelvic Floor Physical Therapy can help to address the symptoms of Ehlers Danlos Syndrome including pelvic pain, pain with sex, bladder leakage, prolapse symptoms, and constipation.  For those coping with Ehlers Danlos Syndrome the therapy includes pain control and management, maximizing joint stability, and determining if you would benefit from supportive devices for unstable joints. Fundamental components of Ehlers Danlos Syndrome treatment are pelvic floor exercises and education about the underlying source of the pain along with a customized home regimen.

Some of the benefits of pelvic floor exercises include:

  • Enhances pleasure during sex by reducing pain
  • Enables urine and stool to more easily pass through the body  
  • Serves as a preventative measure against a pelvic floor prolapse occurring 3
  • Serves as a preventative measure against urinary incontinence
  • Improves muscular strength supporting your baby while pregnant
  • Helps ease birthing a child and reduces the chance of incontinence afterwards

“Pelvic floor exercises reduce the frequency and severity of the symptoms of pelvic floor prolapse”

INTERNATIONAL UOGYNECOLOGY JOURNAL

Ehlers Danlos Syndrome & Pregnancy

For those who are pregnant or intending to get pregnant, be mindful to:

  • Have an open conversation with your primary physician regarding any symptoms you may be experiencing in the context of your  best method of delivery.   Those with severe Ehlers-Danlos Syndrome may be at high risk for dislocation of the hip or damage to their pelvic floor during a vaginal delivery and should consider an alternative.

  • Establish an individualized pelvic floor  strengthening regime.  A healthy pelvic floor exercise regime is essential for every woman, especially if you’re currently pregnant or even postpartum.  Your muscles are called upon to provide even more stability since your joints and ligaments are generally overly flexible.  

  • If getting pregnant is something you’re considering, it’s sensible to receive an evaluation of your pelvic floor from  a physician that  specializes in pelvic floor physical therapy.   Being informed and aware of the potential challenges ahead of time gives you a head start on the proper pelvic floor strengthening exercises in preparation for the demands onto your body of both pregnancy and childbirth.  

Ehlers Danlos Syndrome & Pelvic Floor Physical Therapy:  How I Can Help

The information provided here is educational, not medical advice. If you are someone dealing with symptoms of Ehlers Danlos Syndrome and want to learn how pelvic floor physical therapy can be helpful and or explore your treatment options, please consider contacting Dr. Helen Kim for a complimentary phone consultation.  The evaluation includes an orthopedic and neuromuscular survey of the spine, pelvis, and hips. An internal vaginal examination will also be performed to identify the location of tension in the pelvic floor and hip musculature. During this examination, it is important to identify the degree of dysfunction and find any musculoskeletal or neuromuscular factors contributing to the patient’s condition.   Lastly, the other blogs on this website contain a wealth of helpful information covering many of the issues that commonly surface for those coping with Ehlers Danlos Syndrome.  You can visit my blog by clicking here.

1 Chapman M. Bladder Issues in EDS. Ehlers-Danlos News. Updated Aug. 19, 2020.

2 Arunkalaivanan AS, et. al., Prevalence of Urinary and Faecal Incontinence Among Female Members of the Hypermobility Syndrome Association. J Obstet Gynaecol. Feb. 2009 Volume 29, No. 2.

Reach me if I can answer any questions on physical therapy, serving you locally in New York City or anywhere online virtually through “telehealth“.

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