By: Natalie L. Boehm, MBA, RBLP-T
What is sexual health? How does it affect people with epilepsy?
According to the World Health Organization, sexual health is defined as “a state of physical, emotional, mental, and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction, or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination, and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected, and fulfilled” (WHO, 2021).
Individuals battling epilepsy can have healthy sexual relationships. Many people battling epilepsy have families despite their condition. I have two sons who are nine and seven. My pregnancies were both planned. I started taking 4mg of folic acid and a prenatal three months before my husband and I tried to conceive. I was on Topamax, Tegretol, and Lamictal. I was taken off Topamax due to it being a class D drug and knowing to cause complications. I stopped it in 2010 and never went back on it. Throughout both of my pregnancies, I saw my neurologist more often and he worked closely with my OB-GYN. Even after giving birth, he was very supportive and made sure that I was recovering to prevent any seizures from occurring.
Epilepsy can sometimes cause complications when it comes to sexual health. For men, some anti-convulsant medication can reduce testosterone levels, resulting in having little to no interest in having sex. Having less testosterone can put one at risk for being less fertile.
Women with epilepsy can also experience sexual dysfunction. In the article, Sexual dysfunction in women with epilepsy, the author explains the four major categories that affect women with epilepsy: lack of sexual desire, lack of arousal, lack of orgasms, and sexual pain. Another factor is the stigmatization people face when battling epilepsy. Due to being judged for having epilepsy, many have reported not having healthy relationships. Lack of socialization due to limitations from epilepsy also plays a contributing factor.
For many who’s seizures are not controlled, they may fear they will have a seizure while being intimate. Areas of the brain that are tied to sexual function may be affected by epilepsy. People who have temporal lobe epilepsy are at a higher risk for developing sexual dysfunction.
Importance of practicing safe sex
Practicing safe sex is important for everyone, not just people battling epilepsy. Many things come into consideration when it comes to practicing safe sex. First and foremost is being educated about it. While some schools educate students about safe sex, such as using protection, other programs educate about abstinence. Culture and religious beliefs can play a major role on how someone is educated about safe sex. My mother is Catholic, and my father is Greek Orthodox. The community I grew up in was primarily Catholic and many were against the use of contraception. Many of my friends once engaged, had to have counseling with a priest through Catholic Charities before their wedding. After their wedding, they went for additional counseling about how to plan for a family and for women to learn about when it was ok to be intimate to prevent unwanted pregnancy.
As devout as I am to my faith, I had to be realistic when it came to safe sex and pregnancy. I took birth control for years to prevent an unwanted pregnancy. Before trying for a child, not only was I on birth control, but my husband used condoms as well. My husband was in graduate school, working on his PhD and perio certificate and I was working full time. We did not have family to rely on if we had a child and with the costs of daycare, we knew having a child at that time was not realistic. Plus, I was on Topamax at the time. Topamax is a class D drug and is known for causing complications such as cleft lip and cleft palate (FDA, 2011). I had to put my health and finances ahead of what my families’ culture or religion focused on. Not just for myself, but for any children I would have in the future.
Another important reason people with epilepsy need to practice safe sex is to prevent sexually transmitted infections (STI) and sexually transmitted diseases (STD). Even though the terms may sound similar, the two are very different and it is important to know and understand the differences.
Sexually transmitted infections (STI) are infections that have not yet developed into a disease (Tulane University, 2020). Bacteria, viruses, and parasites are examples of STI’s. Some can develop into diseases and some do not. For example, the Human Papillomavirus infection may not lead to any disease. In some cases, however, it can develop into genital warts or cervical cancer, resulting in it becoming an STD (Tulane University, 2020).
A sexually transmitted disease (STD) is a disease that results from an STI. Acquired Immune Deficiency Syndrome, or AIDS is an STD. AIDS develops from the human immunodeficiency virus (HIV) which is an infection that attacks and destroys T-cells, which help to fight disease and infection.
People battling epilepsy are already dealing with comorbid diseases, meaning they are battling other conditions related to epilepsy, such as mental illness. Adding an STI or STD on top of that can severely impair the quality of life for the person battling epilepsy and can even be fatal. It is why it is essential to practice safe sex when battling epilepsy.
Saying that someone should be able to practice safe sex and being able to are two very different things. In the article, Socioeconomic Status as a Risk Factor for Unintended Pregnancy in the Contraceptive CHOICE Project, women and couples who are at risk for an unintended pregnancy, are least likely to have access to contraception (Iseyemi, et. al., 2017). Demographics such as age, race, and educational level can contribute to an unintended pregnancy. Having access to contraception decreases unwanted pregnancies and abortions according to the CHOICE project (Iseyemi, et. al., 2017).
For individuals on social security disability benefits, the estimated monthly benefit is 1,259 per month (Boyte-White, 2021). The annual income would be a little over 15,000 dollars. According to the U.S. Department of Health and Human Services, the poverty level for one person in a family/household was 12,760 dollars (HHS.gov, 2020). With the cost of rent, utilities, food, and other necessities, the costs of contraception can be out of reach for people battling disabilities.
Risk of pregnancy complications
Every pregnancy has some level of risk, but for women with pre-existing conditions such as epilepsy, their pregnancy is considered high-risk. According to the article Pregnancy complications in patients with epilepsy, women with epilepsy are at higher risk for developing preeclampsia, gestational hypertension, bleeding complications during and after pregnancy.
It is important before conceiving, to research your medications to see what the level of risk they bring. Also, it is important to communicate with not just your OB/GYN, but your neurologist as well. In the article, Pregnancy and Lactation Labeling (Drugs) Final Rule, the Pregnancy and Lactation Labeling Rule (aka PLLR or final rule) helps to assist health care providers about the risks versus benefits and did away with assigning a pregnancy letter category to a prescription (FDA, 2021). Because of this, it is essential to talk to your physician before trying to conceive. If a pregnancy is unplanned, it is important to see your doctor right away to help in making any changes needed to your medication.
Information obtained on medication https://www.drugs.com/pregnancy (see resources)
|Brivaracetam (Briviact)||Risk cannot be ruled out|
|Carbamazepine (Tegretol)||Congenital malformations, spina bifida, craniofacial defects, developmental disorders.|
|Clobazam (Onfi)||May be at risk for withdrawal symptoms|
|Clonazepam (Klonopin)||May be at risk for withdrawal symptoms|
|Clorazepate (Tranxene)||May be at risk for congenital malformations, no adequate studies of this drug to inform a drug-related risk|
|Diazepam (Valium)||Neonatal flaccidity, respiratory/feeding difficulties, hypothermia, possible withdrawal symptoms|
|Eslicarbazepine (Aptiom)||Cleft lip, cardiovascular malformations, neural tube defects.|
|Ethosuximide (Zarontin)||Increase risk of congenital malformations, spontaneous hemorrhage, cleft lip and/or palate, cardiac defects, microcephaly.|
|Felbamate (Felbatol)||Risk cannot be ruled out|
|Fosphenytoin (Cerebyx)||Increased risk of congenital malformations.|
|Gabapentin (Neurontin)||Risks cannot be ruled out|
|Lacosamide (Vimpat)||Risks cannot be ruled out|
|Lamotrigine (Lamictal)||Increased risk of cleft lip or cleft palate|
|Levetiracetam (Keppra)||Risks cannot be ruled out|
|Methsuximide (Celontin)||Risks cannot be ruled out|
|Oxcarbazepine (Trileptal)||Risks cannot be ruled out|
|Perampanel (Fycompa)||Risks cannot be ruled out|
|Phenobarbital (Luminal)||Increased risk of teratogenicity and withdrawal symptoms, fetal malformations.|
|Phenytoin (Dilantin)||Risks cannot be ruled out|
|Pregabalin (Lyrica)||Risks cannot be ruled out|
|Primidone (Mysoline)||May need to receive medications to prevent excessive bleeding during delivery and just after birth.|
|Rufinamide (Banzel)||Risks cannot be ruled out|
|Tiagabine (Gabitril)||Risks cannot be ruled out|
|Topiramate (Topamax)||Increase of cleft lip and/or cleft palate|
|Valproate (Depakene)||Can cause major congenital malformation, neural tube defects (spina bifida), decreased IQ scores following in utero exposure|
|Vigabatrin (Sabril)||Risks cannot be ruled out|
|Zonisamide (Zonegran)||Risks cannot be ruled out|
Resources to practice safe sex
Community organizations and non-profits have stepped up to the plate to help women prevent an unwanted pregnancy. Power to Decide, a non-profit whose mission is to prevent unplanned pregnancy, educates about sexual health, and helps to find clinics in the area that will give women birth control (PowertoDecide.org, 2021). Planned Parenthood is another organization that educates about different forms of birth control and condoms. It is important to know the cost (if any), how they work, how effective they are, any risks, and how to use them. Access to contraceptives is essential for individuals with epilepsy to prevent any unplanned pregnancy.
It is important for individuals with epilepsy to understand their sexual health and the complications that can arise from it. Despite having epilepsy, people with epilepsy can have a healthy sexual relationship and have a family. It is important for anyone who is battling epilepsy to practice safe sex to prevent an unplanned pregnancy, coming in contact with STI’s, and developing an STD. Socioeconomic factors can play a major impact when it comes to being able to gain access to contraception. It is important for women and couples battling epilepsy to understand the risk that anticonvulsants can have on a fetus. Non-profit organizations that focus on preventing unplanned pregnancies can help assist in getting access to contraception.
American Psychological Association (2010). Disability & Socioeconomic Status. American Psychological Association. Retrieved from: https://www.apa.org/pi/ses/resources/publications/disability
Boyte-White, C. (2021). What are the Maximum Social Security Disability Benefits? Investopedia. Retrieved from: https://www.investopedia.com/ask/answers/082015/what-are-the-maximum-social-security-disability-benefits.asp
Catholic Charities of Buffalo (2020). Marriage Counseling Center. Catholic Charities of Buffalo. Retrieved from: https://www.ccwny.org/services/marriage-counseling-center
Drugs.com (2021). Medicine use during Pregnancy or Breastfeeding. Drugs.com. Retrieved from: https://www.drugs.com/pregnancy
Epilepsy Society (2019). Relationships and sex. Epilepsy Society. Retrieved from: https://epilepsysociety.org.uk/living-epilepsy/wellbeing/relationships-and-sex
Harden, C.L. (2008). Sexual dysfunction in women with epilepsy. Seizure,17(2),131-135. https://doi.org/10.1016/j.seizure.2007.11.010
Iseyemi, A., Zhao, Q., McNicholas, C., & Peipert, J.F. (2017). Socioeconomic Status as a Risk Factor for Unintended Pregnancy in the Contraceptive CHOICE Project. Obstetrics and gynecology, 130(3), 609-615. https://doi.org/10.1097/AOG.0000000000002189
Leach, John Paul (2018). Sex, men, and epilepsy. Epilepsy Action. Retrieved from: https://www.epilepsy.org.uk/info/daily-life/sex/men/sex-life
Planned Parenthood (2021). Birth Control. Planned Parenthood. Retrieved from: https://www.plannedparenthood.org/learn/birth-control
Power to Decide (2021). Birth Control Access. Power to Decide. Retrieved from: https://www.powertodecide.org/what-we-do/access/birth-control-access
Tulane University (2020). STI vs. STD: Key Differences and Resources for College Students. Tulane University School of Public Health and Tropical Medicine. Retrieved from: https://publichealth.tulane.edu/blog/sti-vs-std/
U.S. Food and Drug Administration (2011). FDA Drug Safety Communication: Risk of oral clefts in children born to mothers taking Topamax (topiramate). U.S. Food and Drug Administration. Retrieved from: https://www.fda.gov/drugs/drug-safety-and-availability/fda-drug-safety-communication-risk-oral-clefts-children-born-mothers-taking-topamax-topiramate
U.S Food and Drug Administration (2021). Pregnancy and Lactation (Drugs) Final Rule. U.S. Food and Drug Administration. Retrieved from: https://www.fda.gov/drugs/labeling-information-drug-products/pregnancy-and-lactation-labeling-drugs-final-rule
U.S. Department of Health and Human Services (2020). 2020 Poverty Guidelines. Office of the Assistant Secretary for Planning and Evaluation. Retrieved from: https://aspe.hhs.gov/2020-poverty-guidelines
World Health Organization (2021). Sexual Health. World Health Organization. Retrieved from: https://www.who.int/health-topics/sexual-health#tab=tab_2