Epilepsy, Sex & Sexual Relationships
Sexuality is an important and private aspect of life. This complex behavior is shaped by past experience and cultural attitudes and requires good self esteem and psychological well-being. In addition, sexual behavior requires the functioning of certain brain regions, such as the frontal lobe and limbic structures, as well as adequate levels of certain hormones.
For many people, it is difficult to discuss, especially with their doctor. But for people with epilepsy, talking with your health practitioner about fears and problems you have in this area can improve your quality of life.
If you have problems in your sexual relationships, you are not alone. Studies indicate that problems with reduced sexual desire and/or sexual arousal may affect a quarter to a third of people with epilepsy. Antiepileptic drugs, certain types of seizures, fears about disclosure, and the fear of having a seizure can affect desire and interfere with arousal.
Antiepileptic drugs may suppress sexual behaviour. Diminished libido and arousal are most common in people who use barbiturates: phenobarbital and primidone (MysolineŽ). If you feel that your medication is interfering with your sexual relationships, let your doctor know. There may be other options.
Seizures that occur in the brain regions related to sexuality (temporal and frontal lobes) may disrupt sexual function. Some seizures may cause pleasurable sensations due to the areas of the brain that are stimulated during the seizure. However, some women with seizures report that intercourse is painful or difficult. There are ways to reduce your discomfort – ask your health care practitioner if they have suggestions. If you are afraid of having a seizure during intercourse, discuss the possibility with your physician. Some types of seizures are unlikely to happen during intercourse.
The question of when to tell someone that you have epilepsy can be a difficult decision. You may have fears about rejection or other inappropriate reactions. Practising what you are going to say and being clear with yourself and your partner about how you want them to respond can help. Acceptance of yourself and your epilepsy are important in developing an intimate relationship with another person.
Since 1956, clinicians have described sexual dysfunction symptomatically. Most often, a person with epilepsy would be erroneously described as having "global hyposexuality" (being less sexual or non-sexual). Whether or not this phenomenon exists or is as universal as the name suggests, some women with epilepsy have testified to be dissatisfied with their overall sexual function or experiences. More subtle differences in sexual desire are seen in some women with epilepsy. For example, one study found that sexual arousal was similar in women with localization related and primary generalized (presumed genetic) epilepsies, but women with localization related epilepsy imagined they would experience significantly more anxiety in sexual situations.
The definition of sexual dysfunction may vary by culture. Sexual dysfunction may include lack of desire, inability to be sufficiently aroused, problems having an orgasm, and/or sexual pains. Studies have suggested that men and women with epilepsy experience a disorder of arousal rather than a disorder of desire.
How frequently sexual dysfunction occurs in people with epilepsy is not known and its mechanisms have not been found. Most importantly, recognition of sexual concerns amongst persons with epilepsy is necessary in order for effective treatment to be developed and delivered.
Possible Reasons for Decreased Sexual Desire or Arousal
- The stigmatization of the condition of epilepsy can make a person feel self-conscious which can affect self perspective of one's own body and sexual needs.
- Restriction of social opportunities or restriction of access to usual educational and occupational experiences is often inflicted unnecessarily upon a person with epilepsy.
- Recurrent seizures may lead to a sense of vulnerability and helplessness (poor self-esteem), impairing the capacity to form healthy, nurturing relationships.
- Fear that sexual activity will induce a seizure, particularly for persons whose seizures are sometimes triggered by hyperventilation or physical exertion.
- Fear of disclosure of your condition to your partner can affect the sexual dynamics of your relationship.
- Social and familial stresses due to your sexual orientation, as well as living with epilepsy, may affect your sexual responses and relationships.
- In other chronic illnesses, poor acceptance of the condition is associated with sexual dysfunction.
- Sexual behaviour may be negatively reinforced if sexual feelings are a component of a seizure.
- Disruption of brain regions mediating sexual behavior, either by fixed lesions or by epileptiform discharges
- Changes in hormones supporting sexual behavior due to seizures and/or antiepileptic drugs
- Antiepileptic drugs have direct effects on brain regions mediating sexuality and may also cause sexual dysfunction by secondary effects on reproductive hormones.
Sexual dysfunction is not correlated with the number of antiepileptic drugs (AEDs) used or AED blood levels. Sexual deficits may improve when seizures are controlled, even if this requires higher doses of antiepileptic drugs.
- Psychogenic causes:
- psychiatric disease
- psychosis
- affective disorders (depression and bipolar disorder)
- Response to religious, social or family taboos
- Negative early life experiences
- A dysfunctional relationship with a sexual partner
- Concomitant medication:
- psychotropic drugs (antidepressants, antipsychotics, antipanic agents, etc.)
- antihypertensive agents (drugs which reduce high blood pressure)
- Other medical conditions:
- diabetes
- hypertension and hyperlipidemia (associated with small vessel disease)
- certain endocrine disorders
- hyper- or hypo-thyroidism
- significantly low testosterone
- systemic renal (kidney), hepatic (liver), cardiac (heart) and pulmonary (lung) diseases and infections
- injury of genital structures
- Neurological causes:
- spinal cord injury or associated diseases
- peripheral or autonomic neuropathy
- nonepileptogenic cortical lesions (particularly those involving the frontal and temporal lobe)
Treatments
Therapeutic intervention should begin with an explanation that sexual dysfunction can be a unique symptom of epilepsy. One should not attribute sexual dysfunction to personal inadequacy.
- Educate yourself and your sexual partner about epilepsy in general and about the degree to which seizure control can be expected will improve acceptance of the condition, especially when combined with honest discussions about the impact of epilepsy on your life, family and friends.
- An effort should be made to improve seizure control with your current antiepileptic drug(s). If this is not successful, an alternative antiepileptic drug should be considered, especially if you are on a barbiturate.
FACT: Individual patients may experience sexual deficits on one antiepileptic drug and not experience any on another. Until further research elaborates the extent to which individual medications affect sexual function, it may be reasonable to switch to an alternative medication, if seizure control is equivalent.
- If other medical or psychological causes of sexual dysfunction are excluded and adjustment of antiepileptic drugs is not helpful or possible, specific sex therapy techniques may prove useful. Individual and couple psychotherapy may be helpful if there are problems in the relationship.
- If you find intercourse to be painful, relaxation techniques and lubrication products may be helpful.
Impact of Culture on Epilepsy, Disability, Sexuality and Women
Sexuality is viewed differently from culture to culture: it may be a form of entertainment, a religious ritual, an experience of genital mutilation, or an expression of a taboo of lesbianism.
Sexuality and cosmetic effects of therapy are sometimes not discussed. Health care providers should initiate communication on issues of sexuality to reassure women that it is an acceptable topic for discussion. In addition, in almost all cultures, talking about one's disability or disorder is taboo. This attitude has prevented many women of colour with disabilities and many lesbian women with disabilities from fully participating in the disabled women's movement because they feel isolated sometimes. It is essential that we try to understand how cultural differences affect women with disabilities and, more specifically, all women with epilepsy.
Regardless of culture, there are a variety of moral rules and codes that directly or indirectly affect the way in which a woman thinks of her body and sexuality. This culturally induced, constant focus on women's bodies makes it very difficult for women – especially women with disabilities – to like their own bodies. This holds true for women with epilepsy: many consistently hear that they cannot properly fulfill their roles as mothers, as lovers, or as active, fully-functioning community members.
In many cultures, arranged marriages impact upon the sexuality of women with a seizure disorder. For many who are isolated and experience loneliness, this type of marriage may hold out a promise of intimacy, closeness and warmth. On the other hand, many women with epilepsy, because of a low sense of self-worth, may question a man's reasons for wishing to be matched with her. In other words, there is a continual message behind this experience and the experiences of sexual exploitation/violence for women with epilepsy: that good things – like pleasure, intimacy, a greater understanding of ourselves and a love of our bodies – cannot happen to you. This is untrue and should not be the reality that any woman with (or without) a seizure disorder must endure.
