Ehlers-Danlos and Erectile Dysfunction (ED)

ED vs. EDS: 

A single letter makes all the difference between Erectile Dysfunction and Ehlers-Danlos Syndrome

When people hear "ED," most think of erectile dysfunction, a common issue affecting men's sexual health. But in medical circles, "EDS" refers to Ehlers-Danlos Syndrome, a group of connective tissue disorders. While these two conditions seem unrelated, there are important intersections that men with EDS may want to be aware of, particularly concerning sexual health.

Understanding Ehlers-Danlos Syndrome (EDS)

EDS is a collection of genetic disorders that affect the body's connective tissues, which provide structure and support for skin, joints, blood vessels, and other organs. People with EDS often experience symptoms like:

• Fragile, easily bruised skin
• Hyperelastic (stretchy) skin
• Increased joint mobility, often leading to joint dislocations
• Poor wound healing

These symptoms stem from problems with collagen, a key protein that helps maintain the strength and elasticity of tissues​​.

There are several subtypes of EDS, with the hypermobile type (hEDS) being the most common. This form of EDS is often associated with joint instability and chronic pain, but it can also lead to less obvious complications, such as issues with the autonomic nervous system and even erectile dysfunction​.

Erectile Dysfunction in EDS

Erectile dysfunction (ED) is the inability to achieve or maintain an erection adequate for sexual activity. ED can result from a variety of factors, including vascular, hormonal, and psychological issues, but in men with EDS, a combination of connective tissue fragility and autonomic dysfunction may be at play.

One of the ways EDS can contribute to ED is through its impact on the autonomic nervous system, which regulates many bodily functions, including sexual response. Men with EDS, particularly those with the hypermobile type, are at higher risk for conditions like Postural Orthostatic Tachycardia Syndrome (POTS). POTS has been associated with a range of sexual dysfunctions, including problems with erectile function, as well as decreased sexual desire and satisfaction​.

Why ED Might Be Underreported in EDS

Erectile dysfunction is not widely reported among men with EDS, but that doesn't mean it's uncommon. It’s likely that ED in EDS is underreported for a few reasons:

1. Fewer Male Diagnoses: EDS is more frequently diagnosed in women, possibly due to how the condition presents in men. Many men with EDS may not seek or receive a formal diagnosis​.
2. Focus on Other Symptoms: Men with EDS may be more focused on managing their pain, joint instability, or cardiovascular symptoms, and may not report sexual dysfunction unless specifically asked.

Peyronie’s Disease and Penile Fractures in EDS

Peyronie's disease is another condition that affects men’s sexual health, and it has a surprising connection to EDS. Peyronie’s disease causes the development of fibrous scar tissue inside the penis, leading to curved and often painful erections. Both Peyronie’s disease and EDS involve problems with the body's connective tissues, making this link noteworthy.

Penile Fractures and EDS

Men with EDS are at a significantly higher risk of experiencing penile fractures—a rupture of the tunica albuginea, the tissue surrounding the corpora cavernosa in the penis. Studies suggest that men with EDS are 25 times more likely to suffer from penile fractures than those without the disorder​.

This increased risk is likely due to the fragility of connective tissues in men with EDS. Even seemingly mild trauma during sexual activity or masturbation can lead to serious injury, as evidenced by case reports involving penile fractures in men with EDS​.

Treatment for Penile Fractures in EDS

Treating penile fractures in men with EDS can be challenging due to their poor wound healing and fragile tissues. Surgeons often need to take special care during the repair process, using long-lasting or non-absorbable sutures and advising extended recovery periods​. Despite these precautions, complications like recurrence or further injuries are more common in men with EDS.

Managing Sexual Dysfunction in EDS

There are several strategies to manage both ED and the risks associated with connective tissue issues in men with EDS:

1. Physical Therapy: Strengthening the muscles that support joints can help reduce the overall risk of injury and improve stability.
2. Medication: Drugs like phosphodiesterase type 5 inhibitors (e.g., Viagra) can help improve erectile function by enhancing blood flow to the penis. However, it's important to consider potential interactions with other medications used for EDS symptoms.
3. Surgical Options: In cases of severe erectile dysfunction or recurring penile fractures, surgical intervention may be required. This is especially true if conservative treatments fail or if repeated injuries occur.
4. Supportive Devices: For men with joint instability or other physical limitations, assistive devices and techniques can help reduce discomfort during sexual activity.

Conclusion: A Complex Relationship

The relationship between Ehlers-Danlos Syndrome and erectile dysfunction is complex, but not uncommon. The combination of autonomic dysfunction, connective tissue fragility, and the underdiagnosis of EDS in men likely contributes to the underreporting of sexual dysfunction in this population. Similarly, the increased risk of conditions like Peyronie’s disease and penile fractures highlights the importance of specialized care for men with EDS. By acknowledging these risks and addressing them with appropriate treatments, men with EDS can maintain better sexual health and quality of life.

Citations:

1. “Sexual Dysfunction in POTS.” The EDS Clinic. https://www.eds.clinic/articles/sexual-dysfunction-in-pots
2. “Sexual Dysfunction in Ehlers-Danlos Syndrome (EDS).” The EDS Clinic. https://www.eds.clinic/articles/sexual-dysfunction-in-ehlers-danlos-syndrome-eds
3. “Pelvic Congestion Syndrome Linked to Ehlers-Danlos Syndrome and POTS.” The EDS Clinic. https://www.eds.clinic/articles/pelvic-congestion-syndrome-linked-to-ehlers-danlos-syndrome-and-pots
4. Biebel, Mark et al. “Case - Penile fracture in a patient with Ehlers-Danlos syndrome.” Canadian Urological Association journal = Journal de l'Association des urologues du Canada vol. 14,1 (2020): E39-E41. doi:10.5489/cuaj.5982
5. Seneviratne, S. L., Maitland, A., & Afrin, L. (2017). Mast Cell Disorders in Ehlers-Danlos Syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(2), 226–236.
6. Bloom, L., Byers, P. H., Francomano, C., Tinkle, B., & Malfait, F. (2017). The International Consortium on the Ehlers-Danlos Syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(1), 5-7.
7. Hakim, A., O’Callaghan, C., De Wandele, I., Stiles, L., Pocinki, A., & Rowe, P. (2017). Cardiovascular Autonomic Dysfunction in Ehlers-Danlos Syndrome—Hypermobile Type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(2), 168-174.
8. Brady, A. F., Demirdas, S., Fournel-Gigleux, S., et al. (2017). The Ehlers-Danlos Syndromes, Rare Types. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(2), 70-115.

‍