Sexual Dysfunction in Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that can significantly impact sexual health. Symptoms such as joint hypermobility, chronic pain, and fragile tissues create unique challenges for individuals with EDS in their sexual lives. Navigating these challenges requires a multifaceted approach involving medical treatment, personal adaptation, and open communication with partners.

Prevalence and Impact of Sexual Dysfunction in EDS

EDS affects connective tissues throughout the body, including the skin, joints, and blood vessels. This widespread impact can lead to chronic pain, joint instability, and issues with tissue fragility, all of which make sexual activity more difficult. Women with EDS are especially affected by complications such as dyspareunia (pain during intercourse) and chronic pelvic pain, while men may experience erectile dysfunction (ED). These issues often stem from underlying musculoskeletal problems, pelvic floor dysfunction, and vascular issues, which are common in individuals with EDS.

A high percentage of individuals with EDS report difficulties with sexual activity, including low libido, pain during penetration, and challenges with orgasm. Studies have found that women with EDS are more likely to experience pelvic floor dysfunction, resulting in weakened muscles that can make orgasm more difficult to achieve. Additionally, chronic pain, often exacerbated during physical activity like sex, leads to a significant reduction in sexual desire and satisfaction.

Sexual Dysfunction in Women with EDS

Women with EDS often experience a variety of sexual health issues, with dyspareunia and pelvic floor disorders being the most prevalent. The weakened connective tissue that characterizes EDS can lead to conditions such as pelvic organ prolapse and vulvodynia (chronic vulvar pain), which may cause discomfort or pain during intercourse. In addition, women with EDS frequently report increased menstrual pain, heavy bleeding, and irregular cycles, all of which further complicate their sexual experiences. The fluctuating hormones associated with the menstrual cycle can also intensify the symptoms of EDS, making sex particularly challenging during certain times of the month.

Lower libido is another significant issue for women with EDS. The combination of chronic pain, fatigue, and hormonal sensitivity reduces sexual desire and can make sex feel like more of a chore than a pleasurable activity. Women with EDS are often sensitive to hormonal fluctuations, which can exacerbate symptoms such as vaginal dryness, further complicating their sexual health.

Sexual Dysfunction in Men with EDS

Although less commonly discussed, men with EDS also face sexual challenges. Erectile dysfunction (ED) is a frequent concern, potentially due to vascular and autonomic nervous system dysfunctions that disrupt blood flow necessary for achieving and maintaining an erection. Additionally, pelvic floor dysfunction, often discussed in relation to women, can affect men as well, contributing to urinary incontinence and difficulties with sexual performance.

Some men with EDS experience joint pain or dislocation during sexual activity, making it difficult to find comfortable positions. In rare cases, conditions such as testicular torsion (twisting of the testicles) and even penile fractures have been reported in men with EDS due to the fragility of their connective tissues.

How Chronic Illness Can Affect Sex

Individuals with EDS face a range of physical symptoms that can complicate their sex lives, including joint pain, instability, and fatigue. The unpredictable nature of these symptoms often makes sex physically challenging and emotionally taxing. Chronic pain, especially in the pelvis or vulva, is a common issue for women, while men may experience difficulties related to erectile function and physical discomfort during intercourse. In some cases, joint dislocations can occur during sexual activity, leading to injuries and increased anxiety about future encounters.

In addition to physical symptoms, people with EDS may experience emotional and psychological barriers to sexual intimacy. The pain associated with EDS can lead to feelings of inadequacy or shame, as individuals may feel that their condition makes them less desirable or incapable of enjoying sex. Many individuals with EDS worry that their health will prevent them from having fulfilling relationships and sex lives. These emotional concerns can lead to decreased libido and reduced sexual satisfaction.

Strategies for Managing Sexual Dysfunction in EDS

While sexual dysfunction can be challenging for individuals with EDS, there are various strategies that can help improve sexual health and overall satisfaction. Managing these difficulties often involves a combination of medical treatment, physical therapy, and personal adaptation.

1. Position Adjustments: Many people with EDS benefit from experimenting with different sexual positions that reduce joint strain. Using pillows or wedges for support can provide added comfort during intercourse and prevent joint dislocation or pain. Some individuals find that lying on their sides or incorporating an adjustable bed frame can alleviate discomfort.
2. Pelvic Floor Therapy: Strengthening the pelvic floor muscles can improve sexual function for both men and women with EDS. Kegel exercises, guided by a pelvic floor physical therapist, are often recommended to reduce pain, increase muscle control, and enhance sexual performance.
3. Use of Lubricants: Vaginal dryness is a common issue for women with EDS, making the use of lubricants essential for comfortable sexual activity. Non-irritating, natural lubricants, such as coconut oil, can be helpful for those with sensitive skin or co-occurring conditions like Mast Cell Activation Syndrome (MCAS).
4. Pain Management: Chronic pain is a significant barrier to sexual activity for many individuals with EDS. Managing pain through medications, physical therapy, or alternative treatments like massage or heat packs can help reduce discomfort before and during sex. Scheduling sexual activity for times when symptoms are less severe can also improve the overall experience.
5. Open Communication: Effective communication with partners is crucial for navigating the challenges of sexual dysfunction in EDS. Partners should be willing to discuss limitations, adjust expectations, and explore non-penetrative forms of intimacy when necessary. Developing a "sex menu" that includes activities for different energy levels can help couples maintain a fulfilling sexual relationship even during health flare-ups.
6. Proprioception Aids: Individuals with EDS may have difficulty interpreting physical sensations, making it hard to stay present during sexual activity. Engaging in proprioception exercises, such as rubbing or massaging the body before sex, can help increase awareness of physical sensations and reduce discomfort.
7. Adaptive Tools and Equipment: Sex toys, dilators, and pelvic floor wands can help individuals with EDS address specific issues related to pain, joint instability, or difficulty achieving orgasm. These tools, when used in combination with medical treatment and therapy, can enhance sexual satisfaction and comfort.

Psychosocial Considerations

In addition to physical symptoms, sexual dysfunction in EDS is often accompanied by emotional and psychological challenges. Many individuals with EDS report feelings of shame or inadequacy related to their condition and its effects on their relationships. These emotional barriers can decrease libido and intimacy, leading to further frustration and dissatisfaction.

Support groups, counseling, and sex therapy can help individuals with EDS address these concerns. Sex therapy, in particular, focuses on improving communication between partners, reducing anxiety related to sexual performance, and exploring alternative forms of intimacy that accommodate physical limitations.

Partner Dynamics and Communication

As highlighted on the EDS, etc. website, maintaining a healthy and fulfilling sexual relationship while managing EDS requires strong communication and a supportive partner. People with EDS often worry that their condition will prevent them from having fulfilling relationships, but the right partner can help navigate these challenges. Open and honest conversations about limitations, needs, and desires are key to maintaining a positive sexual connection.

Partners should be willing to adapt to the changing needs of someone with a chronic condition, such as being mindful of physical limitations during sexual activity or supporting them through health flare-ups. Developing a strong sense of trust and understanding is crucial for fostering intimacy and ensuring that both partners feel valued and satisfied.

Next Steps for Research on Sexual Dysfunction in EDS

While there is increasing awareness of the sexual health challenges faced by individuals with EDS, more research is needed to fully understand the scope of sexual dysfunction in this population. Current studies confirm the significant impact of EDS on sexual health, but further research is needed to explore the physiological, hormonal, and psychological mechanisms involved.

Future studies should focus on the long-term effects of treatments such as pelvic floor therapy, pain management, and psychological interventions. Additionally, there is a need for more comprehensive studies on the impact of EDS on men’s sexual health, as this aspect remains relatively underexplored.

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FAQ:

What are the gynecological issues with Ehlers-Danlos?‍

People with EDS, particularly women, may experience several gynecological issues, including pelvic organ prolapse, where organs like the bladder or uterus descend into the vaginal canal, and dyspareunia (pain during intercourse). Additionally, EDS can cause vulvodynia (chronic vulvar pain), heavy menstrual bleeding (menorrhagia), and irregular periods.

Does EDS affect breasts?

Yes, EDS can affect the breasts due to the impact of connective tissue fragility. This may lead to sagging (ptosis) at a younger age or increased breast pain and discomfort, especially during hormonal fluctuations or pregnancy.

What are the reproductive issues with EDS?‍

EDS may contribute to fertility problems, including increased risks during pregnancy, such as preterm labor, uterine prolapse, and miscarriage. The condition can also cause prolonged postpartum recovery due to stretched ligaments and weakened pelvic muscles.

Does EDS cause erectile dysfunction?‍

Yes, men with EDS may experience erectile dysfunction (ED), likely due to vascular problems, autonomic dysfunction, or pelvic floor issues, all of which affect blood flow and the ability to maintain an erection.

Why do people with EDS pee so much?‍

Frequent urination in people with EDS is often caused by pelvic floor dysfunction or bladder issues, such as urinary incontinence or bladder prolapse. These problems are linked to weakened connective tissues that support the bladder and pelvic organs.

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References

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2. Walters, Meg. "What Is Ehlers-Danlos Syndrome and Its Connection to Sexual Health?" Giddy, June 12, 2023. https://getmegiddy.com/ehlers-danlos-syndrome-connection-sex-health.
3. Crowe, Rachel. "How Can You Have Sex With Ehlers-Danlos Syndrome?" Giddy, December 14, 2022. https://getmegiddy.com/ehlers-danlos-syndrome.
4. Bennett, Sarah E., et al. "Understanding the Psychosocial Impact of Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome Hypermobility Type: A Qualitative Interview Study." Disability and Rehabilitation, 2019. https://doi.org/10.1080/09638288.2019.1641848.
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6. Blitshteyn, S., Lange, A., Corinaldi, C., Guy, P., & Brook, J. "Sexual Dysfunction in Postural Orthostatic Tachycardia Syndrome (POTS): A Cross-Sectional, Case-Control Study." Journal of Clinical Medicine, 2024. https://doi.org/10.3390/jcm13082274.
7. Saa, Jackie, Sarah Cook, and Karina Sturm. "Ehlers-Danlos Syndromes, Gynecological Complications & Sexual Health." Chronic Pain Partners, https://www.chronicpainpartners.com/ehlers-danlos-syndromes-gynecological-complications-sexual-health/.
8. Hugon-Rodin, J., G. Lebègue, S. Becourt, C. Hamonet, and A. Gompel. "Gynecologic Symptoms and the Influence on Reproductive Life in 386 Women with Hypermobility Type Ehlers-Danlos Syndrome: A Cohort Study." Orphanet Journal of Rare Diseases, vol. 11, no. 1, 2016, pp. 1-6.
9. Handa, V. L., G. Cundiff, H. H. Chang, and K. J. Helzlsouer. "Female Sexual Function and Pelvic Floor Disorders." Obstetrics and Gynecology, vol. 111, no. 5, 2008, p. 1045.
10. Hurst, B. S., S. S. Lange, S. M. Kullstam, R. S. Usadi, M. L. Matthews, P. B. Marshburn, M. A. Templin, and K. S. Merriam. "Obstetric and Gynecologic Challenges in Women with Ehlers-Danlos Syndrome." Obstetrics & Gynecology, vol. 123, no. 3, 2014, pp. 506-513.

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