If You Have Hypermobility and/or Ehlers-Danlos Syndrome and are Wondering if this Can Cause Pelvic Floor Dysfunction, You’ve Come to the Right Place to Learn.
Individuals who have hypermobile Ehlers-Danlos Syndrome (hEDS) have a connective tissue disorder that is associated with defective collage production. While EDS has 13 or 14 subtypes, research continues to be emerging, our pelvic health, spine and TMJ physical therapists are specialists in treating hypermobile Ehlers-Danlos Syndrome. Because hEDS has connective tissue fragility, including in the skin, pelvic organ and pelvic floor region, tendons and ligaments, individuals who have Ehlers-Danlos Syndrome typically also have pelvic floor dysfunction due to these muscles working overtime to try to stabilize their very mobile bladder neck, hips and pelvis.
Our patients who have Ehlers-Danlos Syndrome come to us looking for relief of hypermobility and associated pelvic floor dysfunction, pelvic pain, back pain, hip pain, neck pain, shoulder pain, ankle sprains, wrist pain and shoulder pain.
Hypermobile Ehlers-Danlos Syndrome is associated with debilitating joint pain and instability that can result in pelvic floor dysfunction, disability and reduced function with related to ordinary daily activities, such as opening a drawer or cabinet, lifting a grocery bag and walking for exercise. Additionally, it is common that individuals with hypermobile Ehlers-Danlos Syndrome experience persistent fatigue, chronic pain and musculoskeletal problems. Because we are a speciality pelvic health clinic, often our patients ask us if their Ehlers-Danlos Syndrome can be the cause of their pelvic floor dysfunction. Yes, it can be an important contributor and we explain below.
If Ehlers-Danlos Syndrome Can Cause Pelvic Floor Dysfunction, What Pelvic Symptoms are Most Common?
A study of over 1,300 people who have EDS asked them to report their pelvic symptoms. Here are common findings related to pelvic floor symptoms:
- 60% have Stress Urinary Incontinence
- 54% Urge urinary Incontinence
- 24% Fecal Incontinence
- 21% Pelvic Organ Prolapse.
- 71% had Pelvic Pain, including joint and muscle pain, painful menstrual cycles and back pain.
- Nearly half had possible Sexual Dysfunction with 36% reporting Painful Sex (dyspareunia) over half the time.
- Bladder Symptoms (Stress and Urge Incontinence) were the most bothersome
- Women under age 40 who had prolapse symptoms (pressure, heaviness, aching) had worse impact on their quality of life compared to women over 40 years of age.
All of these symptoms fall under the umbrella of our specialty at Purple Mountain Physical Therapy. As pelvic health specialists, our licensed physical therapists help individuals who have EDS and hypermobility to improve bladder control, pelvic organ prolapse, pelvic pain, fecal incontinence and intimacy related pain and dysfunction. In addition, our PTs specialize in helping our hypermobile patients to improve their stability, the firing and support of their core, posture and hip muscles and to improve their movement patterns and motor control. At Purple Mountain PT we offer comprehensive and holistic treatment programs to alleviate pelvic organ prolapse symptoms, including pelvic heaviness, pulling in the abdomen, pelvic pain, pelvic floor dysfunction, tailbone pain and sacral pain.
For Individuals Who Experience hEDS and Painful Intimacy, our Holistic Approach to Care Addresses the Numerous Drivers of the Pain
Through careful examination of the deep core, often using our rehabilitative ultrasound imaging as well as movement assessment and manual exams, our PTs are able to discover what is happening that contributes to painful intimacy and create a treatment plan to improve these drivers of pain. Painful intimacy is commonly an issue when the pelvic floor muscles are in overdrive, which is often the case with individuals who have hypermobile Ehlers-Danlos Syndrome. Our PTs carefully assess and treat all the layers of the pelvic floor muscles to restore their function and alleviate pain. Additionally, for our patients who have hEDS, we find that hip, pelvic bone and spine problems also contribute to painful intimacy. Our treatment plans are individualized for each person and are designed to improve all pelvic pain, hip pain, back pain, core dysfunction, instability and bladder and bowel issues. To find out more about working with our PTs, you can call us at (616) 516-4334. We are located in Grand Rapids, Michigan and have patients who come to us from all over the state of Michigan and beyond for care.
If you are wondering why our licensed physical therapists specialist in treating Ehlers-Danlos Syndrome, it is because our patients came to us with EDS and we needed to help them. We have devoted our careers to helping individuals overcome pelvic health, spine and TMJ disorders and because hypermobile Ehlers-Danlos Syndrome can cause pelvic floor dysfunction, we hold hEDS near and dear to our hearts and professional focus. If you would like information about working with our specialist hEDS physical therapists, reach out to us at (616) 516-4334 or ask us a question here and we will be in touch.
Over many years of specializing in the field of pelvic health, spine and TMJ treatments, our PTs came to see patterns in our patients. We first became aware of hypermobile Ehlers-Danlos Syndrome when treating patients who had pelvic floor dysfunction whose glutes and abdomen felt stretchier than expected. Seeking to help these individuals, as pelvic health specialists, we have researched and studied how to help individuals who have Ehlers-Danlos Syndrome. Because we know that Ehlers-Danlos Syndrome can cause or at least strongly contribute to the presence of pelvic floor dysfunction, learning how to treat our patients’ hypermobility was important to reducing their pelvic floor problems.
At Purple Mountain PT we provide a personalized and holistic treatment framework for people who have Ehlers-Danlos Syndrome and pelvic floor dysfunction so they can reduce pain, enhance function and resolve pelvic and bladder issues.
Our goal is for all Purple Mountain PT patients to receive the highest quality, holistic physical therapy they need so they can live an active life with confidence. All of our physical therapists are mentored and trained in our methods and also have post-graduate education and experience in the fields of pelvic health, spine and TMJ care and helping people who have hEDS. If you are curious about our specialty care for pelvic floor dysfunction, spine and TMJ disorders for individuals who have Ehlers-Danlos Syndrome, reach out to us at (616) 516-4334 or ask us a question here.
The Bladder, Genitals and Pelvic Floor Contain Many Collagen Rich Tissues. This Includes the Uterus, Bladder, Endopelvic Fascia and Pelvic Ligaments. Individuals who have Hypermobile Ehlers-Danlos Syndrome Can Experience Pelvic Floor Dysfunction and other Pelvic Problems.
Due to the many collagen-rich tissues in this region and the high demands placed on the pelvis, pelvic floor, hips and spine with day-to-day functional activties, such as walking, rising from a chair and climbing stairs, it is common for individuals who have hypermobile Ehlers-Danlos Syndrome to have pelvic floor dysfunction and related complications in the bladder, bowel, organ support and hips. Our PTs work carefully with our patients who have hEDS to help restore your deep stabilizers of your hip, spine, pelvic floor and pelvis. We include diaphragmatic breathing exercises, strengthening for your neck and spine, exercises to address your balance, ankle strength, shoulder movement patterns, wrists and hand strength. Most importantly, we customize your treatment based on your needs. Each person is unique and we partner closely with you to identify how to best help your body.
Helping individuals who have hypermobility requires thoughtfulness and attention to detail so you can feel your best. It is easy to under or overwork a hypermobile body, with neither of these producing results. At Purple Mountain PT, you will find our licensed physical therapists are uniquely qualified and experienced to help you. We consider it an honor to work with you and take care to understand your goals and unique needs in creating your treatment plan. If you are curious if we can help you, call (616) 516-4334 to speak with one of our knowledgable team members or ask us a question here and we will be in touch.
To understand how Ehlers-Danlos Syndrome Can Cause Pelvic Floor Dysfunction, let’s further consider the anatomy
The Endopelvic Fascia runs throughout the pelvis and serves to provide stability and suspension of the organs. The posterior partietal fascia should firmly adhere to the front of the spinal vertebral bodies from the 4th lumbar vertabrae to the sacrum. Given the connections from this internal pelvic fascia to the spine and sacrum, it is no wonder why many of our patients who have hypermobile Ehlers-Danlos Syndrome also struggle with low back pain, chronic SI joint pain, tailbone pain and tension, uterus, bladder and bowel issues.
Within the endopelvic fascia, there exists a muscular band from the piriformis hip muscle and coccygeus (a pelvic floor muscle) that continues with the obturator internus (another pelvic floor muscle and also a hip muscle) and the levator anis muscles (the main group of pelvic floor muscles) and then attaches to the pubic bone in the front of the pelvis.
There is also deep perineal fascia that supports the back of the bladder and helps form the front of the vaginal wall; this fascia may also be compromised in individuals who have hypermobile Ehlers-Danlos Syndrome. The obturator internus is a deep hip external rotator and abductor that provides important support to the posterior hip joint and bladder. It has strong connections to the pelvic floor and may be complicit in the bladder urgency and frequency that individuals who have Ehlers-Danlos Syndrome sometimes experience.
Because all of the muscles and fascia and joints blend, intersect and influence each other, we take a comprehensive and holistic approach to alleviating hypermobility and pelvic floor dysfunction.
Our PTs use hands-on manual therapies anywhere necessary, including the neck, feet, abdomen, spine, hips, pelvis and thighs. Our patients appreciate the rehabilitative ultrasound imaging measurements and biofeedback to help them see their muscles while they are exercising and learning to retrain them. This is a game-changer and is very impactful for getting results. We use movement retraining, deep core training, pelvic floor training, whole body vibration, balance training and postural correction to also improve stability and reduce symptoms.
Our holistic approach to addressing the pelvic floor dysfunction and hypermobility associated with Ehlers-Danlos Syndrome is unique and effective. If you would like more information about our clinic, a specialty pelvic health, spine and TMJ physical therapy clinic in Grand Rapids, Michigan, call us at (616) 516-4334 or ask us a question here. We have patients come to us from all over the USA and from throughout the state of Michigan. We treat adults and children
Given the anatomical connections from the endopelvic fascia connective tissue to the hips and pelvic floor muscles, it is logical that an impairment in connective tissue due to hypermobile Ehlers-Danlos Syndrome can cause pelvic floor dysfunction, hip problems, pubic bone pain, adductor (inner thigh) muscle pain, piriformis syndrome, tailbone pain, SI joint pain and other pelvic problems such as overactive bladder, urinary leakage and defecatory problems.
One study specifically looked into genitourinary complications in individuals who have Ehlers-Danlos Syndrome. They found that urinary complications were the most frequently reported issue. In particular, people who have hEDS have higher rates of stress urinary incontinence, urge urinary incontinence, nocturia incontinence (loss of urine at night), recurrent urinary tract infections, bladder pain, painful urination, painful intimacy, urinary retention, voiding dysfunction and bladder outlet obstruction. Helping improve these problems is our specialty at Purple Mountain PT. We know that even though you have hypermobility, you also have capacity to improve your bladder control, pelvic floor dysfunction, hip stability, deep core muscle firing and overall movement patterns. Our PTs work closely with you to alleviate your pelvic floor dysfunction and genitourinary symptoms related to hEDS as well as to improve your posture, overall stability, movement patterns and reduce your pain.
It makes a difference when you work with a specialist physical therapist, someone who has treated other people just like you and is devoted to learning about how to best treat Ehlers-Danlos Syndrome. Our speciality clinic is unique and provides individuals who have hEDS an opportunity to improve their quality of life. To learn more about working with our licensed physical therapists, call us at (616) 516-4334 or submit your questions here and we will respond.
Knowing that Individuals Who Have Ehlers-Danlos Syndrome have Pelvic Floor Dysfunction and Many Genitourinary Complications, Can Physical Therapy Help? You Will Be Glad To Know That, Yes, PT has Been Found in Randomized Controlled Trials to Help hEDS Symptoms.
Reviewing six randomized controlled trials that examined if physical therapy can help individuals who have hEDS, showed encouraging results. By including exercises and treatment to address hypermobility, all of the trials found an improvement in quality of life for individuals who have hypermobile Ehlers-Danlos Syndrome. One interesting finding that is commonly overlooked in typical orthopedic physical therapy, is that training the inspiratory breathing muscles helped improved exercise capacity. In pelvic PT, our PTs routinely are assessing and treating diaphragmatic function because the diaphragm works in tandem with the pelvic floor muscles. Therefore, all of our patients, whether they have hypermobile Ehlers-Danlos Syndrome or not, are receiving treatment and instruction to retrain and improve their breathing muscles.
The laxity of hypermobile Ehlers-Danlos Syndrome can contribute to multiple musculoskeletal issues, including pelvic floor dysfunction, pelvic pain, hip and back pain and peripheral joint pain, such as ankle and wrist issues.
Because the connective tissue weakness of hEDS can lead to pelvic floor dysfunction, it is common that our patients experience pelvic pain, bladder and bowel dysfunction and sexual discomfort. Additionally, we find that our patients have hypermobile hips and instability throughout the hip complex, leading to hip pain. Often our patients have gluteal tendinopathy or hip labral tears. Additionally, many of our patients experience neck and jaw pain, including clicking and subluxation of the TM joints and muscle tension in the suboccipital muscles leading to tension headaches and neck pain. We also find impairments in the deep core of the low back, specifically in the multifidus muscles, as well as overuse and tension in the global core muscles of the low back, leading to back spasms and pain. One unique aspect of our care is that we use rehabilitative ultrasound imaging to assess, visualize and measure your pelvic floor dysfunction, abdominal wall integrity, coordination of your abdominals with breathing & pelvic floor, bladder emptying and prolapse. We can use this imaging while you exercise to help you learn how to recruit the right muscles and reduce your symptoms.
If you have hypermobile Ehlers-Danlos Syndrome, we understand that you may be experiencing myriad symptoms from your neck to your toes. Our holistic approach accounts all of this and aims to help you recover stability. To learn more about working with our PTs, reach out to (616) 516-4334 or contact us here. We are located in Grand Rapids, Michigan and serve patients who come to us from all over the US. We love this work and consider it a privilege to help you.
The Role of Physical Therapy in Helping Ehlers-Danlos Syndrome Hypermobility, Pain and Pelvic Floor Dysfunction
Individuals who have hEDS have so much capacity to improve and learn how to manage and help themselves. This is our PTs starting point: we help identify that things that can be addressed to help you. Physical therapy plays an important role in addressing the musculoskeletal complications associated with hypermobile Ehlers-Danlos Syndrome. Our PTs take a holistic, trauma-informed approach to helping people with their hypermobility. It is our goal to help:
- Pain Reducation: We use a combination of gentle hands-on manual therapies with targeted, specific stabilizing exercises to retrain your pelvic floor, deep core, hip rotators, glutes, adductors, ankle stabilizers, wrist and forearm muscles, deep core of your neck, scapula stabilizers and more. We help you turn off the overworked muscles and turn on a better, coordinated firing pattern of your muscles. In particular, often the pelvic floor, suboccipital neck muscles and global stabilizers of your back have too much tone and activity. We work to retrain these muscles so they stop overworking, ease up their trigger points and begin to work more effectively for you. Some of our physical therapists are also trained in using dry needling to help provide pain relief and this may be a helpful addition to a plan of care.
- Nerve Pain Relief: With regard to pelvic pain, low back pain and neck pain, we often find our patients who have hEDS have nerve pain. Our PTs check and treat the pathways for numerous nerves, such as the well-known sciatic and Pudendla nerve and also the ilioinguinal nerves, iliohypogastric, genito-femoral nerve, lateral femoral cutaneous nerve, cranial nerves, radial nerve, ulnar nerve and median nerve.
- Improved Joint Stability: Strengthening the muscles that enhance joint support is important for people who have Ehlers-Danlos Syndrome. Our PTs conduct a detailed assessment of many of your muscles to determine which ones are weak and which ones are overworked. Patients are often surprised that, when we check, simple movements of lifting their leg or their neck in certain planes of movement are not possible due to weakness. These weak muscles are contributing to hip pain, neck pain, shoulder tension, pelvic floor dysfunction, ankle sprains and back pain. For example, is very important that the ball-in-socket of the hip joint be positioned and stabilized optimally with each step a person takes. Additionally, for back pain and neck pain and pelvic floor dysfunction, we must have each joint of the spine, SI joint and hips be stable to allow for painfree range of motion.
- Enhance Proprioception: Proprioception is the ability of your brain and body to understand and control where your joints are as you move through space. We find individuals who have hypermobile Ehlers-Danlos Syndrome have impaired proprioception. Some patients tell us that they are “all over the place” when they move. For hte children we treat who have hypermobile EDs, it is common that parents remark that watching their child play sports they observe “flailing arms and legs”. Our PTs work very carefully with each patient, coaching and modifying their movement patterns and muscle firing patterns to improve balance, proprioception and coordination of improved body awareness. This is crucial, as it can aid in the prevention of injuries. We want your brain involved in controlling your body. We use mirrors, tactile feedback, verbal feedback, rehabilitative ultrasound imaging, whole body vibration, practice and repetition to enhance your proprioception. Patients tell us that they learn so much about how to move, how to prevent injury, how to protect their joints.
- Strengthening Pelvic Floor Muscles & Coordinating These Muscles With The Rest of the Pelvic Stability and Deep Core Complex: This is more difficult than it sounds. Individuals who have hEDS often lack awareness of the pelvic floor muscles and we find, by measuring and watching their muscles with rehabilitative ultrasound imaging, pelvic floor dysfunction and impairment of coordinating the pelvic floor muscles while breathing and engaging the abdominals. The pelvic floor muscles should co-contract with the deep lower abdominal muscles. Instead, what we observe is shallow breathing patterns, overuse of the abdominal obliques, deficiency of the deep lower abdominal muscles and pelvic floor greater tone. Our PTs work closely with patients to retrain all of these muscles so they coordinate effectively and can become strong.
- Postural Training: Correcting posture is crucial to reducing stress and strain on the hypermobile joints, pelvic organs and pelvic floor muscles. We want to optimized the strength of the postural stabilizers, while reducing tendency of the ribcage to collapse, which reduces diaphragmatic breathing capacity and, thus, impairs the pelvic floor.
Addressing Pelvic Floor Dysfunction, Hip Labral Tears or Gluteal Tendinopathy, Low Back Impairment, Deep Core Weakness and Nerve Pain Related to Ehlers-Danlos Syndrome Requires a Comprehensive Rehabilitation Approach Emphasizing Pain Reduction, Optimal Movement Patterns, Improving Balance & Proprioception, Strengthening and Stabilizing Key Muscle Groups While Reducing Unnecessary Muscle Guarding.
Focusing on the deep core, pelvic floor muscle training, diaphragm, latissimus, hip stabilizers and specific muscles such as the adductors, psoas, iliacus, obturator internus, gemelli, gluteus medius and minimus, coccygeus and transverse abdominus can enhance overall quality of life. To address stability, we include therapeutic exercises, working one-on-one with your licensed physical therapist, so you receive the feedback, instruction and cuing necessary to improve your motor control.
By using hands-on manual therapies, therapeutic exercies and rehabilitative ultrasound imaging, our PTs help the entire hip complex, including the obturator internus, gemelli muscles and glute medius, maximus and minimus better stabilize the pelvis and hip. Improvement in all of these msucles will also reduce pelvic floor dysfunction and associated bladder, bowel, prolapse and intimacy related issues in the pelvis. By improving neck, hip, pelvis and spine stability and learning how to improve movement patterns and support joints, our patients experience improved quality of life and relief of symptoms.
For anyone who may have hypermobility, there are so many things you can do to improve your quality of life. Often our patients think they are “stuck” with their condition, but that is not the case. While the underlying hypermobility is a lifelong condition that is unique to your body, we know that personalized PT targeting your specific needs can enhance your quality of life, empower you to know what to work on and will improve your exercise tolerance. Working with a PT who specializes in Ehlers-Danlos Syndrome, Pelvic Floor Dysfunction, Hip Problems, Spine and TMJ disorders makes a big difference. Our clinic is uniquely qualified in treating EDS that causes pelvic floor dysfunction and its associated pelvic health, spine and TMJ disorders. We treat adults and children, including adults and kids who have hypermobility. If you want to learn more about working with us, call us at (616) 516-4334 or submit your inquiry here and we will be in touch.
Why Seek Specialized Pelvic Physical Therapy for Your Hypermobile Ehlers-Danlos Syndrome that is Causing Pelvic Floor Dysfunction
Given the complexities of hypermobile Ehlers-Danlos Syndrome and the head-to-toe musculoskeletal symptoms that you may be experiencing, patients tell us that we are the first medical providers they have discovered who understand their condition, use a holistic approach and give them relief. At Purple Mountain PT we provide personalized treatment plans, unique to your specific needs. Yes, we know that Ehlers-Danlos Syndrome can cause pelvic floor dysfunction and we also understand it leads to hip problems, bladder and bowel issues, pelvic pain, back pain, neck pain, headaches, TMJ dysfunction, joint sprains and impairment in exercise tolerance, proprioception and movement patterns. Our PTs take all of these into account when constructing your unique treatment plan of care. To speak with one of our knowledgable team members, call us at (616) 516-4334 or ask us a question here and we will respond to you. And one parting thought: our patients who have Ehlers-Danlos Syndrome are strong people. They have endured more and dealt with lifelong challenges simply to move their body and, yet, they persevere. We see your strength and challenges and we are here to help you be your best self.
Peace,
Founder of Purple Mountain PT.
Our patients come to us looking for help and relief. All of our PTs specialize in pelvic health, spine and TMJ disorders, including working with individuals who have hEDS, connective tissue disorders or generalized hypermobility. Each patient works with two of our specialist physical therapists, so you can have the benefit of a team approach, getting the eyes, clinical experience and benefit of two people problem-solving your plan of care. It makes a difference for your results! We consider it an honor to help you and celebrate your wins!
For more information, check out these articles:
Can Pelvic Floor Therapy Fix Prolapse?
Ehlers-Danlos Syndrome and Bladder Problems. What’s Going On?
Tips to Prevent Pelvic Floor Injury During Childbirth
What is Pelvic Floor Dysfunction?
What is Pelvic Floor Physical Therapy for Menopause?
Tailbone pain and How Pelvic Floor PT Can Help You! Plus Some Self-Care Tips!
References:
Gilliam E, Hoffman JD, Yeh G. Urogenital and pelvic complications in the Ehlers-Danlos syndromes and associated hypermobility spectrum disorders: A scoping review. Clin Genet. 2020 Jan;97(1):168-178. doi: 10.1111/cge.13624. Epub 2019 Sep 1. PMID: 31420870; PMCID: PMC6917879.
Hastings, J., Forster, J. E., & Witzeman, K. (2019). Joint hypermobility among female patients presenting with chronic myofascial pelvic pain. PM&R: The Journal of Injury, Function, and Rehabilitation, 11(11), 1193–1199.
Kciuk, O., Li, Q., Huszti, E., & McDermott, C. D. (2023). Pelvic floor symptoms in cisgender women with Ehlers-Danlos syndrome: An international survey study. International Urogynecology Journal, 34(2), 473–483.
Reychler, Gregory, et al. Physical Therapy Treatment of Hypermobilie Ehlers-Danlos Syndrome: A Systematic Review American Journal of Medical Genetics June 2021
Siccardi, Marco A., Valle, Cristina. Anatomy, Bony Pelvis and Lower Limb: Pelvic Fascia. StatPearls October 2022
