The Connection between Hypermobile Ehlers-Danlos Syndrome (hEDS) and Pelvic Floor Dysfunction

Living with Hypermobile Ehlers-Danlos Syndrome (hEDS) means navigating a complex array of symptoms and conditions that are often intertwined in unexpected ways. One of the lesser-known but often common issues that many people with hEDS experience is pelvic floor dysfunction. Understanding the connection between these two conditions can empower those affected to seek appropriate care and improve their quality of life.

What is Hypermobile Ehlers-Danlos Syndrome (hEDS)?

hEDS is a connective tissue disorder characterized by joint hypermobility, frequent dislocations, chronic pain, and skin that may be soft or velvety and stretchy. The root cause of these symptoms lies in the collagen, the protein that gives structure and strength to connective tissues throughout the body. In people with hEDS, the collagen is altered, leading to instability in joints, ligaments, and even internal organs.

Understanding Pelvic Floor Dysfunction

The pelvic floor is a group of muscles, ligaments, and tissues that support the pelvic organs, including the bladder, uterus (in women), and rectum. These muscles are essential for maintaining continence, supporting sexual function, and providing stability to the pelvis. Pelvic floor dysfunction occurs when these muscles become too tight, weak, imbalanced, and/or uncoordinated, leading to a range of symptoms such as:

• Urinary urgency and/or frequency

• Urinary and/or fecal incontinence

• Pain with intercourse

• Chronic pelvic pain

• Difficulty with bowel movements

The Connection Between hEDS and Pelvic Floor Dysfunction

The connection between hEDS and pelvic floor dysfunction lies in the nature of the connective tissue abnormalities in hEDS. Because the collagen in individuals with hEDS is less stable, the ligaments and muscles, including those in the pelvic floor, may be more prone to weakness, overstretching, and injury.

Here are some specific ways hEDS can contribute to pelvic floor dysfunction:

1. Joint Hypermobility and Instability

The joints in the pelvic region, including the sacroiliac joints and the pubic symphysis, are often hypermobile in individuals with hEDS. This hypermobility can lead to instability and misalignment in the pelvis, placing additional strain on the pelvic floor muscles. Over time, this strain can weaken the pelvic floor, leading to dysfunction.

2. Chronic Pain and Muscle Tension

Chronic pain is a common feature of hEDS and can lead to compensatory muscle tension in the body. In some cases, the pelvic floor muscles may become overactive in response to pain elsewhere in the body, leading to tightness and dysfunction. This can create a cycle where pain leads to dysfunction, which in turn leads to more pain.

3. Prolapse and Organ Support Issues

Due to the weakened connective tissue, individuals with hEDS may be at a higher risk of pelvic organ prolapse, where the bladder, uterus, or rectum may drop from their normal position. This prolapse can directly contribute to pelvic floor dysfunction, exacerbating symptoms like incontinence and pelvic pain.

Managing Pelvic Floor Dysfunction in hEDS

Managing pelvic floor dysfunction when you have hEDS requires a comprehensive and individualized approach. Here are some strategies that can help:

• Pelvic Floor Therapy: Specialized occupational therapists or physical therapists who specialize in the treatment of pelvic health conditions can help you strengthen and relax the pelvic floor muscles, improve posture, and address any specific dysfunctions related to your pelvic floor. In addition, pelvic floor therapists teach lifestyle modifications to modify habits and routines that can improve or eliminate your symptoms.

• Manual Therapy: Completed by trained pelvic floor physical or occupational therapists, manual therapies can be highly effective in treating chronic pain. These may involve internal or external techniques to release tension in overactive muscles, improve muscle tone, and enhance blood flow.

• Lifestyle Modifications: Simple changes avoiding “just-in-case peeing”, eating adequate fiber, drinking enough water, practicing good posture, and engaging in appropriate strength training exercises can help decrease strain on the pelvic floor and improve symptoms.

• Supportive Devices: For patients experiencing pelvic organ prolapse, a pessary—a silicone device inserted into the vagina—can provide support to the pelvic organs and help alleviate symptoms like heaviness, pressure, incontinence, and discomfort.

• Orthotics and Braces: For those with significant joint instability, using orthotics or braces to support the lower back, hips, or knees can help stabilize the pelvis and reduce strain on the pelvic floor.

• Mindfulness and Relaxation Techniques: Practices such as mindfulness, yoga, meditation, and deep breathing can help regulate an overactive and dysregulated nervous system that often accompanies chronic conditions. These techniques can also reduce muscle tension, indirectly benefiting the pelvic floor.

• Pain Management: Over-the-counter pain relievers, such as acetaminophen or nonsteroidal anti-inflammatory drugs (NSAIDs), may help alleviate chronic pain. In more severe cases, medical treatments such as trigger point injections, botox, and/or nerve blocks can be alternative options for pain management when conservative measures are not as successful.

• Laparoscopic Surgery: Although surgery is generally a last resort, in cases of severe prolapse or other structural issues, minimally invasive laparoscopic surgery might be necessary to repair or reinforce the pelvic organs and connective tissue.

Conclusion

The connection between hypermobile Ehlers-Danlos Syndrome and pelvic floor dysfunction is a clear example of how interconnected our bodies truly are. By understanding this link, individuals with hEDS can seek out the appropriate care and interventions needed to manage their symptoms and improve their quality of life. If you suspect you may be experiencing pelvic floor dysfunction, it’s essential to consult with a healthcare professional , such as an experienced pelvic floor therapies, who is knowledgeable about both hEDS and pelvic floor issues. Living with hEDS is challenging, but with the right support and management strategies, it is possible to lead a fulfilling life.

Reach out to Intuitive Therapies & Pelvic Health, a specialty pelvic health occupational therapy practice in Tampa, Florida, for comprehensive care to manage both hEDS and pelvic floor dysfunction. We treat clients locally in the Tampa Bay area and provide virtual lifestyle and wellness coaching for individuals all over the world!

*Disclaimer: The information provided in this blog post is for educational and informational purposes only and is not intended as medical advice. Always consult with a qualified healthcare provider for diagnosis, treatment, and guidance specific to your medical condition. The content shared here should not be used as a substitute for professional medical advice, diagnosis, or treatment.