Sex and intimacy are 2 of the great pleasures of adult life. However, many people with epilepsy must leap extra hurdles when they wish to have a sexual relationship. That is because up to 2 out of 3 people with epilepsy feel some change in desire or behavior.1
Understanding what is causing a lack of desire is the first step to enjoying a healthy sexual relationship.
What science says about epilepsy and intimacy
Sexuality and desire are complicated. In fact, they are just as complicated as epilepsy. The main ways epilepsy impacts sexuality are:2-4
- Seizures may happen in parts of the brain involved in hormone production or sexual function.
- Anti-seizure drugs may have side effects such as fatigue, making someone too tired for sex.
- Anxiety or depression about seizures can decrease desire.
- Drugs given to treat depression coinciding with epilepsy can cause sexual dysfunction.
One study found orgasms could be difficult in both men and women with epilepsy. Sexual pain was more common for women, and erectile dysfunction was an issue for many men.2-4
Overall, research suggests that 5 out of 10 men and 3 out of 10 women with epilepsy report problems with sex. Men reported more lack of interest and problems keeping an erection, or premature climax. Women reported low interest, difficulties with orgasm and vaginal dryness, and vaginal spasms.2-4
Some of these problems may be associated with the type of epilepsy itself or with anti-seizure drugs. For example, men with temporal lobe epilepsy, the most common form of focal epilepsy, may have a hard time getting and keeping an erection. Side effects of epilepsy and its treatments include fatigue, sleep problems, and depression. All of these can impact desire.2-5
Body image and self-esteem
Body image and self-esteem can take a beating among people with epilepsy. Low self-esteem, self-consciousness, and poor body image can delay or inhibit sexual relationships. Common concerns about body image include:2,4
- Being overweight or too thin
- Scars from surgery
- Incontinence caused by a seizure
- Anxiety about having a seizure during sex
- Visible equipment or devices
Starting new relationships and maintaining old ones
Establishing a new relationship can be intimidating for anyone but may present special challenges for someone with epilepsy. Issues to be discussed with a potential partner can range from when to reveal your diagnosis to fertility to seizure first aid. Explaining your daily regimen to stay healthy may also seem hard. But, as with any new relationship, open and honest communication is best.
If prescription drug side effects are an issue, let your doctor know. Your doctor may be able to change your dose or prescribe a different medicine. Changing your medicines may not be a good option, but there may be other alternatives. There are also many ways to treat erectile dysfunction and vaginal dryness.
For existing relationships, individual or couples counseling may help. Counselors can help you build communication skills and self-esteem. A sex therapist may help with issues specific to intimacy. Your epilepsy center may have people on staff who can help.
Finally, people who know their epilepsy is caused by a genetic variant may worry about passing epilepsy to their children, which may contribute to a lack of desire for intimacy. If this is a concern for you, talk with your doctor. They may refer you to a genetic counselor. These are experts who specialize in talking with people about their risk of passing along genetic traits.