Ehlers Danlos Syndrome & hEDS Physical Therapy in New York City

Ehlers-Danlos Syndrome (EDS) can cause significant challenges due to its impact on connective tissues, leading to chronic pain, joint instability, and pelvic floor dysfunction. Physical therapy offers a personalized approach to managing these symptoms, focusing on strengthening muscles, improving joint stability, and reducing pain and fatigue. My goal is to empower those with EDS to improve their comfort, function, and overall quality of life, enabling them to live as fully as possible despite the challenges of the condition.

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.
All About Ehlers Danlos Syndrome & How I Can Help You
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).
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
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.
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.
What is hEDS (hypermobile Ehlers-Danlos Syndrome)?
Hypermobile EDS is a connective tissue disorder that affects collagen and elastin, proteins that provide strength and elasticity to skin, ligaments, blood vessels, organs, and tendons. Because connective tissue is found everywhere in the body, hEDS causes problems with the physical structure and function of the body and widespread pain. Faulty collagen can make the body’s connective tissues overly stretchy, leading to excessive joint movement (hypermobility), complete separation of a joint (dislocation), or partial joint separation (subluxation) throughout the body.
In people with hEDS, the common locations of joint instability, dislocations and subluxations include the fingers, shoulders, elbows, knees, and ankles. These joints are frequently affected by everyday activities that involve gripping, repetitive movements, and loading, such as with typing, texting, cleaning, carrying groceries, walking, and climbing stairs. Prolonged pressure on joints, such as during sleep, can cause the jaw, shoulder, and hip to sublux and then trigger muscle spasms and pain. This is due to the looseness of the surrounding ligaments, leading to joint instability. It’s important to note that joint instability places increased stress on the cartilage and other structures, accelerating wear and tear, which can eventually lead to osteoarthritis. Unstable joints can also impair the body’s proprioceptive awareness, resulting in difficulty assessing where the joints are in space, therefore leading to poor coordination, balance problems, and an increased risk of falls.
Many are surprised to learn hEDS can contribute to Irritable Bowel Syndrome (IBS) and constipation, through several potential mechanisms related to its effects on connective tissue. Hypermobile EDS can actually produce a variety of gastrointestinal issues by affecting the tissues throughout the digestive tract. The connective tissues in the gut become overly stretchy and weak, impairing the muscle’s ability to move food along, and causing slow digestion (gastroparesis) and constipation. The weakened tissues in the gut can also contribute to acid reflux, hernias, and rectal prolapse. Research suggests hEDS may also affect the nerves controlling gut function, further contributing to digestive problems.
The frequency and severity of events originating from hEDS varies greatly among those coping with the disorder. Often to compensate for joint instability, muscles have to work harder to stabilize the body and this becomes a driver to muscle fatigue, pain, and spasms. Over time, muscle imbalances emerge, further stressing joints and soft tissues. This creates a vicious cycle where the body’s solution to one problem (muscle compensation) inadvertently worsens the original problem (joint instability) and creates new problems (muscle imbalances, pain, functional impairment).
What’s the Difference Between EDS and hEDS?
While it’s common to see the terms “EDS” and “hEDS” used interchangeably, hEDS is one specific type of EDS. Ehlers-Danlos Syndromes (EDS) is an umbrella term that refers to a group of 13 distinct inherited connective tissue disorders – though all share common features related to faulty collagen production, including:
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Joint hypermobility (joints that move beyond the normal range)
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Skin hyperextensibility (stretchy skin)
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Tissue fragility (easy bruising, poor wound healing)
Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common type of EDS with a primary focus on joint hypermobility, but unlike some other EDS types, the specific genetic cause of hEDS is unknown and diagnosis relies solely on clinical evaluation probing for:
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Generalized joint hypermobility, joint instability, and chronic pain.
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Systemic manifestations like skin hyperextensibility and musculoskeletal pain. It can also be associated with a variety of other symptoms including easy bruising, gastrointestinal problems, and autonomic dysfunctions such as POTS (Postural Orthostatic Tachycardia Syndrome or excessive increase in heart rate upon standing, lightheadedness, dizziness, brain fog, fatigue, and even fainting).
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Family history of hypermobility
While general treatment approaches for EDS apply to hEDS, specific treatment plans may vary depending on a person’s needs and the presence of other complications. A person who is suspected of having hEDS or recently diagnosed with the condition will benefit from a thorough evaluation and a personalized treatment plan.
Treating hEDS (hypermobile Ehlers-Danlos Syndrome) with Pelvic Floor Therapy
Everything starts with a thorough assessment learning your medical history, symptoms, pain levels, bowel and bladder function, sexual pain and issues, and other relevant medical information. During the evaluation, your posture, spinal and ribcage alignment, breathing patterns, range of motion, joint stability (particularly in the pelvis, hips, and spine), muscle strength, muscle tone, and any painful areas or trigger points will be assessed. This may involve both external and internal (vaginal and/or rectal) examination of the pelvic floor muscles as well as the abdomen. This will give more information in finding the origin and the drivers of your pain. Lastly, understanding how you move and perform daily activities will give us more information on how they impact your pelvic floor symptoms.
A thorough assessment can usually identify specific impairments contributing to any pelvic floor dysfunction, such as:
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Muscle Weakness
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Muscle Hypertonicity: Muscles may compensate and spasm in an attempt to stabilize the pelvis, trunk, and hip joints
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Poor Muscle Coordination: Difficulty controlling the pelvic floor muscles.
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Pain: This can be due to muscle tension, joint instability, nerve irritation, or other factors.
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Proprioceptive Deficits: Reduced awareness of body position and movement.
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Postural Imbalances
Patients with hEDS benefit from a comprehensive approach that combines multiple different treatment methods to address the complexity of hEDS. In addition to medical management, pelvic floor physical therapy can help control the symptoms of hEDS. Targeted manual therapy to treat affected muscles and joints, along with strengthening and stabilizing exercises and bracing/taping, will directly address the range of issues related to excessive joint movement in the trunk, pelvis, and the extremities. This will allow us to devise a treatment plan and form realistic and achievable goals, such as pain reduction, improved bladder or bowel control, better sexual function, and increased ability to participate in daily activities.
By addressing the underlying musculoskeletal issues caused by hEDS, pelvic floor physical therapy can effectively treat pelvic floor dysfunction and improve quality of life. Depending on findings in an assessment, manual therapy may be in order such as soft tissue mobilization to release muscle tension, myofascial release to address restrictions in the fascia, or gentle joint mobilization and approximation to reduce pain and improve joint position.
In someone with hEDS, pelvic floor muscles can become weak, tight, and uncoordinated due to increased laxity of connective tissue. The specific connective tissues being referred to are primarily:
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Ligaments: The fibrous bands that connect bones to other bones and help to stabilize joints. In the pelvis, ligaments provide support to the pelvic organs (bladder, uterus, rectum) and help to maintain their proper position.
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Fascia: The pelvic floor’s fascia acts like a supportive web, holding organs in place, transmitting forces from muscles, contributing to sensation, but when restricted or damaged can lead to pain and loss in bladder/bowel control and more.
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Tendons: These are fibrous tissues connecting muscles to bones. The tendons that attach the pelvic floor muscles to the pelvis are also made of collagen and can be affected by hEDS. Weakened tendons can impair the ability of the muscles to contract effectively.
When these connective tissues are compromised, they are less able to properly support the pelvic organs (like the bladder, uterus, and rectum) and maintain control over urination and bowel movements. As a result, the pelvic floor muscles have to work much harder to compensate for this lack of support, leading to muscle fatigue, weakness, pain, and potentially problems like pelvic organ prolapse, urinary incontinence, or urinary retention.
Through treatment and exercises, pelvic floor physical therapy will help patients to properly relax, contract, and coordinate these muscles. It will improve bladder and bowel control, reduce pain during sexual activity, and alleviate pelvic pain. Because the pelvic floor is part of the overall core, it is important to strengthen the muscles of the pelvis and trunk as a unit. A strong core acts as a stabilizing force for the entire pelvic region, much like an internal brace that supports the lower back, hips, and pelvis. A strong core will reduce both excessive movement in loose joints and pressure off the pelvic floor muscles. Without a strong core, these muscles would have to work overtime to compensate for the lack of stability, often leading to pain, weakness, and dysfunction.
Patients with hEDS cannot participate in traditional “core strengthening” exercises, such as planks and bird dogs due to the increased strain on the wrist, elbow, and shoulder joints and possible joint dislocations. However, they can still follow a progressive strengthening routine in modified positions, with an emphasis on overall joint protection and stability. The goal is to improve endurance and the coordination, timing, and awareness of muscle contraction and relaxation in the trunk, pelvis, and extremities, practiced in various positions.
Braces and kinesiology tape are tools used to support the pelvis and extremities and therefore can improve pelvic floor muscle function. Braces, like SI joint belts and abdominal binders, provide trunk support and stability, improving posture and reducing pain. Kinesiology tape on skin offers gentle support around joints, improves circulation, and increases awareness of muscle activation. Braces and kinesiology tape can limit excessive movement and provide support to hypermobile joints, injured or strained tissues in the pelvis and lower back, therefore reducing pain and instability.
The pain and symptoms of hypermobile Ehlers-Danlos Syndrome (hEDS) and pelvic floor dysfunction can be debilitating. Pelvic floor physical therapy offers a specialized and effective treatment focused on the underlying musculoskeletal issues associated with hEDS that is tailored to each person’s needs. The information provided here is educational, not medical advice. Since everyone’s circumstances is unique and if you would like to explore your treatment options, please contact our office for a complimentary phone consultation.
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“…..She [Dr. Kim]…is extremely knowledgeable, innovative and thorough in her treatments and explanations….” – A.S
“…Helen is an excellent physical therapist, whose holistic approach helped me improve my overall health and well-being..” – C.C.
“…Helen helped me through my pregnancy with twins and post-partum with everything from terrible back pain to fixing my severe diastasis recti…” – L.G.
“…She [Dr. Kim] is one on one and focuses on your individual needs, I have been going to her for ten years and there is nobody in nyc I trust more…” -R.
Contact Dr. Helen Kim
(646) 643-4688
I understand that dealing with pain or dysfunction can be confusing and overwhelming. I welcome your questions and encourage you to reach out. Whether you’re curious about my services, want to discuss your specific concerns, or are ready to schedule an appointment, please don’t hesitate to contact me. You can reach us by phone or complete the form below. I’m here to help you on your path to recovery and a better quality of life. My practice does not have contracts with any private insurers, Medicare, and Medicaid. Payments are required at the time of service, and can be made with credit cards, FSA/ HSA cards, Zelle, or cash. Click here to learn more.