Living with Ehlers-Danlos Syndrome (EDS) can be challenging enough without adding pelvic floor dysfunction to the mix. If you’ve been diagnosed with EDS, you’re probably already familiar with its impact on your connective tissues, joints, and skin. But what you may not realize is how this condition can also affect your pelvic floor, leading to muscle spasms, constipation or megacolon, pelvic organ prolapse, bladder issues, and discomfort during sex.
Pelvic floor dysfunction can show up in a variety of ways for people with EDS, from chronic pelvic pain to problems with bladder control. Fortunately, there are ways to manage these symptoms and improve your quality of life. In this post, we’ll explore the connection between Ehlers-Danlos Syndrome and pelvic floor dysfunction, the common symptoms, and the treatment options that can help you manage these issues.
How Ehlers-Danlos Syndrome Affects the Pelvic Floor
Ehlers-Danlos Syndrome is connective tissue disorders that affect the body’s collagen. Collagen is a protein that helps give strength, connection and structure to tissues like skin, ligaments, fascia and muscles. Because EDS impacts collagen, the tissues in your body—including those in your pelvic girdle—can become more fragile, stretchy, and prone to injury. As ligaments and tendons tend to stretch more than someone without EDS, muscles may become spasmed to “hold you together” better. This includes muscles of the pelvic floor.
The pelvic floor is a group of muscles that support important organs like the bladder, bowel, and uterus (or prostate.). These muscles help control functions like urination, bowel movements, and sexual activity and appreciation, as well as labor and birthing. Collagen containing connective tissues such as the ligaments that hold the bladder and uterus in place, the tendons and ligaments that hold the pelvis, sacrum, and pubic bones together, can all be affected in someone with EDS. The results can lead to a range of symptoms that fall under the umbrella of pelvic floor dysfunction.
Common Symptoms of Pelvic Floor Dysfunction in EDS
Pelvic floor dysfunction can look different from person to person, especially in people with Ehlers-Danlos Syndrome. But here are some common symptoms you might experience:
1. Chronic Pelvic Pain
Pelvic girdle pain is one of the hallmark symptoms of pelvic floor dysfunction in people with EDS. This pain can range from a dull ache to sharp, stabbing sensations. It may worsen after sitting for long periods, standing, or engaging in physical activity. Because EDS can make tissues more prone to injury or strain, or allow bones to go out of alignment (as they are not held as tightly by ligaments and tendons) the muscles in the pelvic floor may spasm or become tight, leading to discomfort.
2. Bladder Issues
People with EDS often experience urinary or bladder symptoms over time, including urinary incontinence (leaking urine) or urinary urgency (the sudden, strong need to urinate even if you’ve voided recently). The weakened pelvic floor muscles may not be able to fully support the bladder, which can lead to some of these symptoms. However chronically painful, spasmed muscles can also lead to incontinence and urgency, so seeking out the care of a specialized pelvic floor physical therapist to help identify what the underlying cause for you is important.
3. Bowel Dysfunction
Alongside bladder issues, bowel dysfunction is also common. This can include symptoms like constipation if the pelvic floor muscles are spasmed and have difficulty relaxing or because the collagen in the colon can stretch much larger, leading to something called megacolon. Difficulty passing stool, or even fecal incontinence can also occur. Because the pelvic floor muscles help control bowel movements, weakness or muscle spasms in these muscles can make it hard to fully relax and pass stool.
4. Muscle Spasms and Tightness
EDS can lead to muscle spasms or overactivity in the pelvic floor muscles. Instead of relaxing when they’re supposed to, these muscles may stay tight and contracted- trying to hold everything together for dear life!, causing pain, pressure, and discomfort. This is known as a hypertonic pelvic floor, and it can make daily activities more uncomfortable, as well as sexual pleasure, orgasm, exercise, driving, and sitting for work.
5. Pain During Sex
For many people with EDS, pelvic floor dysfunction can lead to painful sex (known as dyspareunia). This pain might occur during or after sexual activity, whether it is with penetration or the contraction of orgasm, and can be related to tight or spasming pelvic floor muscles. For people with a vagina, the pelvic muscles may become overly tight, making penetration painful. Individuals with a penis with EDS may experience pelvic discomfort or pain during ejaculation.
Why Pelvic Floor Dysfunction Happens in EDS
There are several reasons why Ehlers-Danlos Syndrome can contribute to pelvic floor dysfunction:
1. Weakened Connective Tissues
Because EDS affects the connective tissues in your body, the tissues that support the pelvic floor muscles are often stretchier than normal. This elasticity makes it harder for the pelvic floor muscles to function properly, leading to symptoms like incontinence or pelvic pain.
2. Joint Hypermobility
Many people with EDS experience joint hypermobility, meaning their joints can move beyond the normal range of motion. While this flexibility may seem like a benefit, it can actually put extra strain on the pelvic floor muscles. The hypermobility of the joints in the pelvis and hips can cause the muscles to become overworked, tired, or overactive/spasmed as they try to stabilize the area, leading to tightness and pain.
3. Chronic Fatigue and Muscle Weakness
EDS is often associated with chronic fatigue and general muscle weakness. When your muscles are tired or weak, it’s harder for them to support the pelvic organs, leading to pelvic floor dysfunction. Over time, the muscles can become even more fatigued or weakened, making symptoms worse.
How to Manage Pelvic Floor Dysfunction with EDS
While pelvic floor dysfunction can be extremely frustrating and painful, there are many treatments that can help manage your symptoms and improve your quality of life and work towards your goals. Here are some of the most effective strategies for managing pelvic floor dysfunction in Ehlers-Danlos Syndrome:
1. Pelvic Floor Physical Therapy
One of the best ways to manage pelvic floor dysfunction is through pelvic floor physical therapy. A specialized physical therapist can help you learn how to strengthen your pelvic floor muscles if they’re weak or relax them if they’re too tight. Pelvic floor physical therapy may include therapeutic exercises (which strengthen the muscles stabilizing your lumbopelvic area, or pelvic floor muscles), manual therapy, balance retraining, taping and other stabilization and strengthening methods; or relaxation and downtraining techniques like deep breathing, education on the use of a tool like a dilator or wand to facilitate trigger point release or muscle release internally at home, internal release in session, bowel and bladder retraining, bowel massage, and education.
2. Bladder Training
If you’re experiencing bladder issues like frequent urination, urinary urgency or incontinence, bladder training can help. This involves gradually increasing the amount of time between bathroom trips to help retrain your bladder. A pelvic floor therapist can guide you through this process, helping you regain control over your bladder function.
3. Relaxation Techniques for Muscle Spasms
If your pelvic floor muscles are tight or prone to spasms, relaxation techniques can help relieve tension and reduce pain. Deep breathing exercises, progressive muscle relaxation, and gentle stretches can all help release tension in the pelvic floor. Yoga or meditation can also help calm the nervous system, which is often overstimulated in people with EDS. Down training techniques like deep breathing, education on the use of a tool like a dilator or wand to facilitate trigger point release or muscle release internally at home, internal release in session, education on different positions for sexual appreciation that are more comfortable and stabilizing, and other aspects of caring for yourself at home can be part of your plan of care with your pelvic physical therapist.
4. Pacing and Energy Management
Since fatigue is a common issue for people with EDS, learning how to pace yourself and manage your energy is crucial. Overexertion can lead to muscle fatigue and worsen pelvic floor dysfunction. Focus on balancing activity with rest and avoid pushing yourself too hard.
5. Modifying Daily Activities
Making small adjustments to your daily routine can help reduce pelvic floor strain. For example, avoiding heavy lifting, using proper posture, and taking breaks during prolonged sitting can all help prevent overloading the pelvic floor muscles.
6. Managing Bowel Health
If you’re struggling with bowel dysfunction, keeping your digestive system healthy is key. Staying hydrated, eating a diverse diet that meets your dietary needs and includes both types of fiber can be helpful. Additionally, a pelvic floor physical therapist can work with you on bowel retraining to avoid straining, and include techniques and education such as best positioning and use of a stool at the toilet for bowel movements, bowel massage, bowel training for timing and habits, and open mouth breathing during a bowel movement. A pelvic floor therapist may also recommend specific techniques for relaxing the pelvic muscles during bowel movements (as well as helping to avoid hemorrhoids!)
7. Supportive Garments
Some people with EDS find relief from pelvic pain by wearing supportive garments like pelvic belts or compression shorts. These garments can help stabilize the pelvis and reduce strain on the pelvic floor muscles during physical activity but must be used under the guidance of a trained professional- having these garments or belts too tight around the abdomen can lead to too much pressure on the pelvic floor contributing to pelvic organ prolapse.
Pelvic Floor Dysfunction and Intimacy
For those dealing with pelvic floor dysfunction in EDS, intimacy can sometimes be a challenge. Pain during sex or discomfort after can make it difficult to enjoy intimacy with your partner or self pleasure. A pelvic floor therapist can also offer guidance on positions or techniques that may help reduce discomfort during sex, referrals for recommended reading, other support resources like sex therapists, bests lubricants and tools to try, pillows for positioning, and more.
Final Thoughts on Managing Pelvic Floor Dysfunction with Ehlers-Danlos Syndrome
Living with Ehlers-Danlos Syndrome is already a complex experience, and adding pelvic floor dysfunction to the mix can feel overwhelming. However, with the right approach, there are effective treatments and strategies that can help you manage your symptoms and improve your quality of life.
By working with a pelvic floor therapist, incorporating relaxation and strengthening techniques, and making small adjustments to your daily routine, you can reduce pelvic pain, improve bladder and bowel control, and get back to feeling more comfortable in your body. Understanding your unique challenges with EDS and how they affect your pelvic floor is the first step toward finding relief.
