Hypermobility and Pelvic Health: What is hypermobility and how does it affect the pelvic floor?
Hypermobility and Pelvic Health
We had a wonderful Doctor of Physical Therapy Student from Stockton University with us this summer, and she chose to write us an informative blog about Hypermobility and Pelvic Health as her student in-service to share with our community. Jackie graduated in May of 2024 and has been finishing her last clinical rotation with us at Practically Perfect Physical therapy learning everything about pelvic health, pediatric, and our other specialized patient populations. Jackie writes…
Most people know that joints can get stiff or tight which can cause pain, decreased ability to move, or lead you feeling like you need a nice long stretch. But what happens if a joint is already super mobile or “too stretchy”? This is called joint hypermobility. Joint hypermobility is a general term for increased motion at a joint that is beyond the normal range. Don’t get me wrong, it is the goal to be flexible, however, it is possible to have TOO much motion.
There are many disorders that can cause chronic joint hypermobility but this blog post is going to focus on Hypermobile Ehlers Danlos Syndrome (hEDS). hEDS is a genetic disorder that is considered “rare” and new research is emerging every year. People with hEDS have faulty collagen which is a structural protein throughout the body’s connective tissues. Connective tissues are things like ligaments, skin, fascia, stomach lining, blood vessels, etc. This collagen is not formed correctly due to an inherited malfunction in the DNA. Since collagen is everywhere in the body holding things together, this means that hypermobile Ehlers Danlos Syndrome is a “systemic disorder” that can potentially affect any part of the body- including the pelvic floor!
So why is having a stretchy body really a bad thing? Well, too much mobility compromises stability. Tendons, muscles, ligaments and cartilage all work together to keep a joint stable and in good alignment. A muscle is a contractile tissue which means it can shorten its fibers when the brain wants it to. Tendons connect these muscles to the bone. A ligament, however, is not a contractile tissue. It is a band of fibrous tissue that is mostly made up of collagen that connects bone to bone. Someone with hEDS cannot rely on their ligaments to provide proper stability in their joints because their ligaments typically have too much stretch or “laxity” due to the malfunctioning collagen.
Decreased stability can cause dislocation, subluxation(partial dislocation), and chronic wear and tear. Let’s think about a knee joint as a kitchen cabinet. If one of the hinges on your kitchen cabinet has one loose screw, over time the other screws on the hinge will loosen. This will start to cause the cabinet to shut unevenly, or maybe it starts to squeak with use. After more time goes by using the cabinet, the screws on the other hinge will get loose too causing even more issues. Maybe now the whole cabinet door is sideways, or maybe the screw holes have become worn down and the screws no longer fit. Joint instability is kind of like a loose screw. If ligaments in your knee are not holding the bones of your thigh and lower leg together tight enough, there is too much accessory motion when the knee is bending.Over time this can stretch the ligaments even more and cause subluxations. This then causes the bones to grind on each other in a way they are not supposed to, causing wear and tear on the joint surfaces. Even more time goes by and maybe next time the person jumps and lands the knee dislocates or the ligament sprains. Over time, chronic joint instability can cause chronic joint pain.
Don’t worry, if you have an unstable joint, chronic joint pain, or are very flexible. It does not mean you automatically have this disorder. There is a list of criteria that someone must meet to be diagnosed with hEDS by a doctor. This criteria includes presence of joint pain, presence of associated medical conditions, family history, exclusion of alternate diagnoses, and having a positive score on the Beighton Scale (specific test for joint hypermobility). hEDS is a spectrum disorder. This means it affects everyone that has it differently. Symptoms can vary in severity from person to person or in one person day to day. Like we said before, this is a systemic disorder and affects all body systems causing a wide range of symptoms.There is also research suggesting associations between hEDS with other medical disorders. Let’s break it down by body system.
Joints and muscles: Like we mentioned earlier in the blog, hEDS can cause dislocations/ subluxations, joint instability, and increased range of motion. It is common for people to also experience muscle tightness, muscle weakness, or decreased muscle tone. People with hEDS also have impaired proprioception. This means they have difficulty controlling their body through space and have decreased balance, increased instances of tripping and falling, and are often labeled as “clumsy.” People with hEDS can also have increased instances of scoliosis, foot abnormalities, palate and teeth abnormalities, and early onset arthritis.The most common musculoskeletal symptom that is reported is joint pain and instability.
Integumentary system: Of course this disorder affects the largest organ of the body – the skin! People with hEDS can have skin described as soft, thin, stretchy, and fragile. Easy bruising, abnormal scarring and unexplained stretch marks are also symptoms.
Immune system: Chronic inflammation is also a symptom that people with hEDS experience. MCAS (Mast cell activation syndrome) causes an overactive immune system and is a condition that is associated with hEDS.
Gastrointestinal System: Common GI symptoms that can occur include diarrhea, constipation, nausea, abdominal pain, bloating, and reflux. Some associated conditions include IBS (irritable bowel syndrome), gastroparesis (delayed stomach emptying), median arcuate ligament syndrome (compression of an artery that leads to the stomach), and celiac disease (serious allergy to gluten).
Nervous System: The nervous system is made up of the central nervous system and the autonomic nervous system. The central nervous system consists of the brain and the spinal cord. The autonomic nervous system controls unconscious/ involuntary processes in the body. Dysautonomia is a malfunctioning of the autonomic nervous system and is a condition associated with hEDS. A more common type of dysautonomia is called POTS – Postural orthostatic tachycardia syndrome. Some symptoms of this disorder include: high heart rate, fainting, dizziness, chronic fatigue, issues regulating temperature, headaches, and brain fog. Other associated conditions of the nervous system include chiari malformation (when the base of the brain slips down a little and puts pressure on the spinal cord), concussion complications, and tethered cord syndrome (when the spinal cord becomes stuck). There is also a correlation between depression, anxiety, and hEDS.
Cardiovascular System: Collagen is a component of blood vessels. People with hEDS may have issues with capillary fragility, varicose veins, poor venous return of blood, aortic root dilation (stretching/ widening of the aortic artery) and mitral valve prolapse (a valve in the heart not closing properly).
Genitourinary System: Ligaments also help hold up our pelvic organs. Hypermobile Ehlers Danlos syndrome is also associated with pelvic organ prolapse. This is when the bladder, rectum, or uterus can sag into the vaginal canal. Some other associated conditions of this system include inguinal hernias, bladder dysfunction, dysmenorrhea (painful periods), menorrhagia (heavy periods), dyspareunia (pain with sex), and endometriosis (a painful condition where cells similar to the inside of the uterus grow on the outside of the uterus).
I know that was a lot of medical information but the bottom line is that this disorder affects the whole body. Different symptoms or associated conditions can come on at any time during life. So how does this all relate to pelvic health?
If you have visited this website before, I’m sure you are familiar with the pelvis. The pelvis has two halves that connect in the front at the pubic symphysis joint and in the back to the sacrum to form the sacroiliac joints. The pelvis also connects to the top of the thigh bone making up the hip joints. All these joints related to the pelvis means there are many ligaments in this area helping to hold the pelvis in place and functioning well. This, as you could imagine, could be a place in the body where hEDS causes issues. The sacroiliac and pubic symphysis are supposed to have some motion for normal function. If there is too much motion here, the pelvis becomes unstable and can sublux ( partially dislocate) and then get stuck in malalignment. This can then disrupt motion of the spine, lower extremities, and load transfer abilities. It can also cause pain in the hips, back, and pelvis. The body can try to compensate for these inadequate ligaments by creating pelvic stability by tightening up the pelvic floor muscles. Tight pelvic floor muscles can cause pelvic pain, tailbone pain (coccydynia), impaired coordination and strength of pelvic floor muscles, pain with sex, and issues with bowel and bladder function.
Pelvic organ prolapse is another associated condition that can affect pelvic health and function. Pelvic organ prolapse can be mild, moderate, or severe and in severe cases may need surgical intervention. Pelvic organ sagging can cause pelvic pain, pelvic heaviness, pain with sex, urine or fecal incontinence, or trouble fully emptying the bladder or bowels.
Another thing to consider for people with hypermobile Ehlers Danlos Syndrome and pelvic health is pregnancy. When someone is pregnant, there is more blood in their body to support the fetus. This can cause POTS symptoms or vascular symptoms to worsen if they have these associated conditions. There can also be some complications with the effects of anesthesia in people with POTS or hEDS. There is also an increased risk of vaginal/ perineal tearing due to tissue fragility. The hormones released during pregnancy including relaxin, progesterone and estrogen increase laxity in ligaments to make it easier for the pelvis to stretch and deliver the baby. This can increase symptom severity in people with hEDS.
As you may imagine, Physical Therapy is one of the most important treatment strategies to help manage hypermobile Ehlers Danlos Syndrome. A regular exercise regime can help provide stabilization and support to hypermobile joints. A physical therapist can provide manual therapy to tight muscles, help realign joints that have subluxed, and give feedback for proper strengthening, coordination, and balance exercises. They can also provide insight for orthotics, braces, and referrals when needed. Specifically, pelvic floor PT can help address pelvic floor muscle dysfunction, pelvic organ prolapse, pregnancy symptoms, SI joint dysfunction, and pelvic pain.They can also help treat constipation and other bladder or bowel dysfunction related to hEDS. Discomfort with sex can also be treated in pelvic floor PT and education on joint protection and modified sex positions can be helpful for this issue.
I was diagnosed with POTS – Postural orthostatic tachycardia syndrome when I was 12 years old. My middle school years were filled with dysautonomia symptoms, seeing many medical specialists, trying different medications, and lifestyle modifications. A year later my siblings and I were diagnosed with hypermobile Ehlers Danlos Syndrome and at that time not too much was understood other than we had stretchy joints. I felt like my siblings and I were always at the doctor for another symptom or ailment that no one realized were all related to hEDS.Talk about stress (which can have a negative effect on the pelvic floor by the way)!
Fast forward 10 years when I was in college and my POTS symptoms were stable, I started experiencing severe back pain. Little did I know, this pain was really coming from a very hypermobile pelvis. My pelvis was subluxing and getting stuck in the wrong position all day every day with even small movements. Overtime, I started getting pain in my tailbone. This pain was so intense I could not sit down for longer than 30 minutes- which was very hard when I was in PT school all day long! My doctor finally recommended pelvic floor PT. This is where I found out I had pelvic floor dysfunction and my pelvic floor muscles could not relax or contract properly because the muscles were working hard all day long trying to stabilize my pelvis. In PT we worked on pelvic floor relaxation, core strengthening, and adjusting my SI joints. I learned so much about pelvic health, my symptoms slowly started improving, and I got back to feeling more like myself. Pelvic floor education and physical therapy really improved my quality of life and I love to spread awareness about this disorder for others that may be going through a similar experience.
References:
Tinkle, B., Castori, M., Berglund, B., Cohen, H., Grahame, R., Kazkaz, H., & Levy, H. (2017). Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural history. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 175(1), 48–69. https://doi.org/10.1002/ajmg.c.31538
Karthikeyan, A., & Venkat-Raman, N. (2018). Hypermobile Ehlers-Danlos syndrome and pregnancy. Obstetric medicine, 11(3), 104–109. https://doi.org/10.1177/1753495X18754577
