Ehlers-Danlos Syndrome and Your Sex Life

Ehlers-Danlos syndrome (EDS) is a group of rare genetic diseases that causes issues with collagen production. Collagen is present throughout the body, in the joints, skin, and other connective tissues. People with EDS may experience some complications with their sex lives due to the disease.

The following will give you additional information on the effects of these complications, and on some treatments that may help ease the sexual symptoms of EDS.

How may EDS affect my sex life?

EDS is more commonly reported in women than men — its prevalence is roughly 70% in females and 30% in males — but it can have an effect on the sex lives of either gender.

Women

There are a number of gynecological effects that EDS can have, which could affect a woman’s sex life. Women with EDS commonly experience problems with the pelvic floor. Such pelvic floor disorders can lead to issues such as dyspareunia (painful sexual intercourse) and pelvic organ prolapse (where internal organs bulge out of the vagina), as well as urinary incontinence (loss of bladder control). The weakness in pelvic floor muscles also can lead to trouble with orgasms.

Women with certain types of EDS also tend to have dysmenorrhea (painful menstrual cycle) and menorrhagia (heavy bleeding during menstruation), which could affect the desire for and frequency of intercourse.

EDS also can lead to external symptoms such as vulvodynia (chronic pain or burning sensation on the outside of the vagina) or labial edema (swelling of the vaginal lips), which can make intercourse uncomfortable or painful.

All these symptoms can affect a patient’s sex life either physically, due to pain or discomfort, or psychosocially, due to possible embarrassment.

Men

Although less common in occurrence, EDS also can affect men’s sex lives. Pelvic floor weakness occurs in men just like in women and can lead to erectile dysfunction. Case reports of men with EDS also found cryptorchidism (issues with testicles not descending), hypogonadism (not producing enough testosterone and/or sperm), tight foreskin, and testicular torsion (twisting of the testicles). There also was a case report of a man with EDS who experienced a penis fracture.

All of these symptoms could have an impact on sexual function. The reports of sexual complications in men with EDS are very rare in the literature, however, so it is not clear whether they are all related to EDS.

Treatments

There are several treatments available that can help with the sexual symptoms of EDS. You should check with your physician for guidance and to determine any other underlying medical issues.

Physical therapy including Kegel exercises can help strengthen the muscles of the pelvic floor. Strengthening these muscles can help alleviate a number of symptoms including incontinence, prolapse, erectile dysfunction, and pain during intercourse.

Your doctor also may prescribe lubricants or topical ointments for pain during sex.

Last updated: Sept. 30, 2020

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.