Spina Bifida & Sex: A Brief Overview
Any birth defect in which the spine does not close completely is considered spina bifida. This defect typically develops during the first month of pregnancy and seems to be the result of both genetic and environmental factors. Spina bifida occurs in roughly 7 out of 10,000 live births. Of the three types of spina bifida, occulta is considered the least severe and myelomeningocele is considered the most severe. Some babies receive surgery a few days after being born to prevent more damage, while other babies do not need surgery at all. Depending on the severity of the spina bifida, people with spina bifida have a range of disabilities including difficulty with mobility (including paralysis), bladder control, nerve damage, learning disabilities and mental health issues like depression or anxiety. Latex allergies, musculoskeletal problems, obesity, skin conditions and GI disorders can also be found in those with spina bifida. (www.spinabifidaassociation.org). The impact of Spina Bifida on a person’s level of sexual functioning and their sexual desires is an area that is often missing in the literature and in conversations between health care providers and their patients. Highlighted below are some common concerns related to sexual function and sexual desire for people living with spina bifida.
If you have been diagnosised with spina bifida take a few moments and ask yourself in what ways you imagine living with spina bifida has impacted your sexual development. If you are dating someone who has spina bifida, get curious and explore with your lover each topic and see which ones are applicable. If you are a health care provider, take some time to make sure your patient is aware of the common pitfalls and struggles. Sometimes simply hearing from your health care provider sexual development information can give you a framework for learning about your sexual self, thus making your work about actually living with spina bifida easier. While your grief might be the same because the loss is real, your health care provider can help you get better at maximizing your sexual self.
Musculoskeletal issues: Due to limited mobility or orthopedic constraints not all sexual positions are possible. However, with a little creativity and strong communication skills you and your partner can still have fun identifying which positions allow for the most amount of sensations. Additionally, with people who have experienced paralysis other body parts other than the traditional genital may become more sensitive. Consider this as you and your partner explore what is most pleasurable and comfortable when engaging in sexual activity. Because you and your partner need to explore and try out different positions, you will be less likely to fall into the trap of the same old sexual routine.
Exhaustion: Extra energy may be required to get through the day due to mobility limitations or level of pain. Time for sexual activities may need to be arranged on a day where the partner with spina bifida has more time to devote to the sexual activity — meaning that afterwards the person has the flexibility in his or her schedule to relax afterwards and recover. Often the actual sex, while feeling good, taxes the body and the person may need some extra time to physically recover. If your partner has spina bifida make sure you are cognizant of their need to physically recover. If your partner has not brought up this issue, make sure to ask them about their ability to physically recover and how you two can best communicate about this need.
Latex Allergy: Latex allergies are more common in those with spina bifida so latex free condoms or another form of birth control other than condoms may be needed. If you find yourself developing yeast infections regularly after sex, or you are getting red and feeling itchy, talk with your doctor to help you accurately diagnosis the problem. It is important to know whether these symptoms are due to a latex allergy or another medical problem. In addition, these symptoms can make sex more uncomfortable or even painful. Address this medical issue so that you can maximize the pleasure you and your partner experience during sex. Urinary Incontinence: Some people with spina bifida experience bladder or bowel control issues due to nerve damage in that region. The nerve damage prevents the brain from receiving the message that the bladder is full or that the bowels need emptying. Some people with spina bifida use catheters to deal with this problem. If you have spina bifida in addition to prepping your partner with what to do if you have an ‘accident’ try to empty your bladder or bowel before and after sexual activity. In addition to physically telling a partner what are realistic expectations, sharing with your partner your own emotional feelings around the incontinence is critical you will need to spend some time prepping your partner with what they can do if you have an accident. If you are the partner of someone with spina bifida, encourage them to use the bathroom before and after sexual activities. Also take some time to find out what it is like for him/her to deal with this issue? What is the story they have made up in their head about the meaning of this? Your partner has likely had to deal with this issue since birth, and as an adult will likely have fairly good management of their urinary incontinence. And while they may be comfortable with how they deal with this issue as an individual, they might be uncomfortable about how to share with you, their partner. Furthermore having an accident in front of others, especially a romantic partner, could be very embarrassing and frustrating. Talking to your partner about accidents before one happens is an excellent way for you to gauge how they would like to be best supported in that moment of vulnerability. Talking about it will also reduce the fear factor around having an accident. Urinary Tract Infections: To minimize the frequency of UTIs, which are more common in people livingwith spina bifida due to nerve damange, both the person with spina bifida and their partner should wash their genitals before and after intercourse. Additionally, urinating before and after sex helps keep the urinary tract “clean.” Lastly avoiding using soap on the genitalia will help keep the body’s natural chemicals in balance with itself.
Delayed or Inability to Orgasm: A decrease in sensation, typically due to nerve damage (which also impacts bladder and bowel control), may cause some with spina bifida to experience difficulty reaching orgasm, at least compared to what is shown as the norm. As the partner with someone with spina bifida remember that the way your partner achieves orgasm or what it looks like may be different than what you have seen. Make sure to check in with your partner about what they find pleasurable. For both the individual with spina bifida and the partner, you must both keep in mind that the goal with any sexual activity should be to enjoy what feels good and to maximize the sensations that you do have. Do not get caught up in the “shoulds” of what an orgasm should look or feel like. Irritated Skin: Make sure to use water-soluble lube due to skin sensitivities. Irritated skin could impact sexual self-esteem in several ways. First someone with irritated skin may be embarrassed to show their partner. Trying to hide the irritated skin will limit the types of activities you engage in and decrease your comfort level. Secondly, irritated skin can be painful, especially in the genital area. If you are experiencing pain due to irritated skin you are going to be less likely to want to engage in sexual activity. Remember, the goal is to maximize pleasure. Buying and using lubrication is a very simple way to maximize pleasure and make sure you or your partner feel comfortable in their body.
Erectile Dysfunction: Nerve damage or loss of sensation may cause some males with spina bifida to experience significant loss in their ability to get or maintain an erection — never mind orgasm. As the patient, your job is to be honest with yourself and with those around you. You can’t change reality. You can only change yourself. The faster that you can accept your limitations, the faster you will be able to spend the energy reaching out to others about this issue and pushing yourself to reach out to others. Your job is to identify with yourself what is your pattern with ED and what excites you. Remember, there are many other factors like anxiety, low sexual self-esteem or medication that could be contributing to ED. If, after you have really examined the contributing factors of your ED, you attribute the ED to the spina bifida then your job is to teach your body to become more responsive. You need to maximize the sensation that you do have. Furthermore, once you understand the factors contributing to your ED, you can reach out to the appropriate professionals to help you with this issue. If you are the partner of someone with spina bifida, your job is to understand your partner’s base line level. Additionally, you should remind your partner that there are many ways to experience orgasm or sexual pleasure.
Vaginal Sensation: Some women with spina bifida experience different sensation than their peers without spina bifida due to nerve damage. Generally however, the normal course of sexual response can be experienced by women with spina bifida. Like all women, it might just be a matter of figuring out what you enjoy most and how you respond to different types of touch. If you are a woman with spina bifida take some time to explore your own body and identify what feels good to you. If you are the partner of a woman with spina bifida encourage your partner to do this exploration or even help them. This can be fun and informative for you too. If you are feeling stuck and unsure how to explore — check out the rest of our website, we have hundreds of tips on how to conduct sexual exploration.
Body Image: Someone with spina bifida has likely had to struggle with their body image, as they might not fit the “norm” of what is desired sexually. If you are the partner of someone with spina bifida you can bolster your partner's self-esteem by sexualizing the area of their body that they are most insecure about. Helping someone feel acceptance is critical. If you are the partner of someone with spina bifida, be patient. Remember that your partner has probably experienced a lifetime of having people tell them that there is something “wrong” with their body. They have probably too taken on this view and need to reframe their thinking about their body. Help your partner identify what they like about their body by telling them what you like.
Being Desexualized: A person with spina bifida may have had their sexuality denied or ignored by their parents, peers and society as a whole. Their sexuality has likely been informed by these negative experiences and they may have even denied their own sexuality. In addition, if a person starts to see themselves as sexualized they have to do something about it like put themselves out there and date which can feel like a tremendous risk. As the person with spina bifida it will be helpful for you to be direct with others about your disability. As the partner on someone with spina bifida, if you don’t flinch or pretend not to be phased, your partner will be more likely to open up to you. By allowing your partner to open up, you can help them grow towards a more positive sexual identity. Depression/Anxiety: People with spina bifida may be more likely to suffer from depression and or anxiety due to chronic pain and/or their disability status. They can also experience depression and anxiety from social isolation due to limited access to various spaces–whether that was not being able to go to a friend’s house because the house was not physical set up for their disability, living in a place where public transit was not nearby or being excluded from activities at school due to the disability. If friends and family were not supportive or understanding of the disability, this could also contribute to depression and anxiety.
Trauma: Children who are disabled are more likely to be physically or sexually abused as, as they are considered easier targets by perpetrators. Trauma can greatly impact someone's sexuality, their ability to trust and their ability to feel safe in an intimate relationship. Your partner might also feel angry, frustrated, scared or sad in situations where they are reminded of the trauma. It would be very important to know if you or your partner has had sexual trauma and how this impacts the relationship. For instance, what you might be interpreting as disinterest may be your partner’s attempt at trying to keep distance to feel safe. Obviously, both are an issue, but knowing why someone is doing something will influence how you deal with the issue.
Remember...Good sex is possible if you have spina bifida or have a partner with spina bifida. Like any couple, part of good sex is knowing your partner and adjusting to their needs and comfort level. Each of the above issues was touched on very briefly. If you have identified one of these issues as a concern for yourself or your partner, and feel stuck talking to a professional might be helpful. People with spina bifida can still have great sex!