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What type of EDS causes prolapse? Exploring the link between connective tissue and pelvic health

4 min read

An estimated 24% to 75% of women with Ehlers-Danlos Syndrome (EDS) report experiencing pelvic organ prolapse. Understanding what type of EDS causes prolapse is crucial for managing symptoms and finding effective, tailored treatment for this common complication.

Quick Summary

Prolapse is most frequently associated with Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) due to overly lax connective tissues. Weaker fascial and ligamentous support structures mean pelvic organs are less stable and more prone to descent, often presenting earlier in life than is typical.

Key Points

  • Hypermobile EDS (hEDS) is the primary cause: The most common type of EDS, hEDS, is most frequently linked to pelvic organ prolapse due to weakened pelvic floor connective tissue.

  • Faulty collagen weakens support: Defective collagen in EDS leads to naturally looser and more fragile connective tissues throughout the body, including the fascial and ligamentous structures that support pelvic organs.

  • Prolapse can occur earlier in life: Unlike typical age-related prolapse, individuals with EDS can experience symptoms, such as pelvic pressure and bulging, at a much younger age, sometimes even in their 20s.

  • Other EDS types also have risk: While less common, Classical EDS and Vascular EDS also carry a risk of prolapse due to their respective forms of tissue fragility.

  • Specialized treatment is essential: Standard treatments may be ineffective; specialized physical therapy focusing on stabilization and proprioception is often necessary.

  • Multidisciplinary care is vital: Management requires a team approach, including pelvic health specialists who understand the complexities of EDS, especially when considering surgical options.

In This Article

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndromes (EDS) are a group of inherited connective tissue disorders caused by faulty collagen production or processing. Connective tissues provide structure and support to the entire body, including joints, skin, and organs. In individuals with EDS, these tissues are often weaker, more fragile, or more lax than usual, leading to a range of symptoms and potential complications.

The primary culprit: Hypermobile EDS (hEDS)

While multiple EDS types can involve tissue fragility, the most common type, hypermobile EDS (hEDS), is most strongly linked to pelvic organ prolapse (POP). The defective collagen in hEDS results in generalized joint hypermobility and systemic connective tissue laxity. This laxity extends to the pelvic floor, which is a hammock-like structure of muscles, ligaments, and fascia that supports the bladder, uterus, and rectum. When these supporting structures are weakened and overly flexible, they are unable to provide adequate support, causing the organs to shift downward and bulge into the vaginal canal.

Why hEDS causes prolapse

The mechanism behind hEDS and prolapse is directly related to the compromised collagen. Normal collagen provides a strong, supportive framework. In hEDS, the faulty collagen makes the fascial and ligamentous supports for the pelvic organs too stretchy or weak. This weakness can be exacerbated by daily activities that increase intra-abdominal pressure, such as standing for long periods, lifting, coughing, or even chronic constipation. For individuals with hEDS, symptoms can often begin at a younger age than is typical for prolapse, sometimes even in their 20s, and without common risk factors like pregnancy or menopause.

Other EDS types and their connection to prolapse

While hEDS is the most frequent cause of prolapse in the EDS community, other types of EDS can also present with this complication due to their specific tissue weaknesses. It is important to note that the presentation and severity can vary significantly.

  • Classical EDS (cEDS): Characterized by skin hyperextensibility and atrophic scars, cEDS is also associated with tissue fragility. Recurrent hernias and rectal prolapse in childhood are recognized as minor diagnostic criteria for cEDS, indicating systemic tissue weakness. Pelvic organ prolapse is a known, though less common, gynecologic complication.
  • Vascular EDS (vEDS): This rare, life-threatening type primarily affects arteries and organs, making them prone to rupture. The defective collagen in vEDS is particularly fragile, and while rarer, uterine prolapse has been reported as a potential complication, though the main risks are more severe vascular and organ issues.

Comparing EDS types and prolapse risk

Feature Hypermobile EDS (hEDS) Classical EDS (cEDS) Vascular EDS (vEDS)
Prolapse Link Most frequent connection due to generalized tissue laxity Associated due to generalized tissue fragility; minor diagnostic criterion includes anal prolapse in childhood Rarely reported; focus is on vascular rupture risk
Primary Cause Laxity and hypermobility of joints and connective tissue Skin hyperextensibility and abnormal scarring Arterial and organ fragility
Prevalence Most common type of EDS Estimated at 1 in 20,000 Approximately 1 in 50,000
Pelvic Health Issues Pelvic organ prolapse, incontinence, and chronic pelvic pain are all common Possible, but more common issues are fragile skin and joints Least common type to present with gynecologic issues like prolapse

Common signs of prolapse with EDS

Understanding the symptoms is the first step toward effective management. Symptoms in hypermobile individuals can be similar to those in the general population but may have a different onset or progression. Common signs include:

  • A feeling of pelvic pressure or heaviness, especially after standing or lifting.
  • Sensation of a bulge or a “falling out” feeling in the vaginal area.
  • Bladder or bowel issues, such as urinary incontinence (leaking with cough or sneeze), urgency, difficulty emptying the bladder, or constipation.
  • Lower back or pelvic pain.
  • Sexual dysfunction or discomfort.

Management strategies for EDS and prolapse

Managing prolapse in individuals with EDS requires a specialized, multidisciplinary approach, given the underlying connective tissue weakness. Standard treatments may not be as effective, and careful consideration is needed, especially if surgery is discussed.

  1. Specialized Pelvic Floor Physical Therapy (PT): Traditional PT focused only on strengthening may be insufficient. Specialized PT for hypermobility focuses on stabilization, proprioception (body awareness), and coordinated muscle function. It addresses the deep core and pelvic girdle, which provide essential support.
  2. Pessary Fitting: A pessary is a removable device inserted into the vagina to support the pelvic organs. For EDS patients, a pelvic floor physical therapist can assist with fitting and management to ensure comfort and effectiveness.
  3. Lifestyle Modifications: Avoiding activities that place high-impact or excessive strain on the pelvic floor can help manage symptoms. Proper breathing techniques and posture can also help reduce intra-abdominal pressure.
  4. Addressing Autonomic Dysfunction: Conditions like Postural Orthostatic Tachycardia Syndrome (POTS), which is common in hEDS, can impact bladder function and worsen symptoms. Managing POTS is an integral part of comprehensive care.
  5. Surgical Considerations: Surgery for prolapse in EDS patients is complex due to fragile tissue that may not hold sutures effectively and a higher risk of recurrence. It is crucial to have a surgeon experienced with connective tissue disorders and to have detailed discussions about the risks and benefits before proceeding.

Conclusion

The link between hypermobile Ehlers-Danlos Syndrome and pelvic organ prolapse is significant and well-documented. For those affected, recognizing that EDS causes prolapse is the first step toward seeking appropriate care. A personalized, multidisciplinary approach focusing on stabilization, specialized physical therapy, and symptom management is key to improving quality of life. Awareness among healthcare providers about this connection is critical for proper diagnosis and effective treatment planning.

Visit the Ehlers-Danlos Society for more information on hypermobility and related conditions.

Frequently Asked Questions

Yes, hypermobile EDS (hEDS) is the most common type of EDS associated with pelvic organ prolapse (POP). The condition's characteristic hypermobility and laxity of connective tissue directly affect the stability of the pelvic floor, increasing the risk of organs shifting downward.

The underlying cause is a defect in collagen, the protein that provides strength and elasticity to connective tissues. In EDS, this faulty collagen means that the ligaments and fascia of the pelvic floor are too lax or fragile to adequately support the pelvic organs over time.

Research indicates that the prevalence of pelvic organ prolapse is higher in women with Ehlers-Danlos Syndromes. Studies have shown a significant percentage of women with EDS reporting prolapse, often at an earlier age compared to the general population.

In addition to prolapse, individuals with EDS frequently experience other pelvic floor dysfunctions. These can include urinary and fecal incontinence, chronic pelvic pain, bladder urgency, incomplete emptying, and painful intercourse (dyspareunia).

Prolapse in EDS patients often occurs much earlier in life and can be more complex to treat. The underlying cause is systemic connective tissue weakness rather than primarily factors like childbirth or menopause, which are common culprits in the general population.

Management for EDS-related prolapse typically requires a multidisciplinary approach. This includes specialized pelvic floor physical therapy focused on stabilization, using supportive devices like pessaries, and making lifestyle modifications to minimize strain. Surgery may be considered but is approached with caution due to fragile tissues.

Yes, surgical options require special consideration. EDS patients may have more friable tissues that hold sutures poorly, leading to a higher risk of surgical failure or recurrence. It is critical to work with a surgeon experienced in treating connective tissue disorders and to have realistic expectations.

While pelvic organ prolapse is typically associated with women's anatomy, men with EDS can also experience tissue laxity. This can manifest as hernias, rectal prolapse, or weakened abdominal walls, though these are different from the pelvic organ prolapse that affects women.

References

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Medical Disclaimer

This content is for informational purposes only and should not replace professional medical advice.