Sex and spinal cord injuries

Dear A Concerned Caregiver,

It's proactive of you to try to understand your patient, and learning more about what he may be going through can help you care for him better. However, as a caregiver, you may recognize that this could go beyond your responsibility or area of expertise. Having a conversation about sex can be uncomfortable and intrusive for many. If your patient is open to talking with you about his sexuality, it's helpful to maintain a straightforward and nonjudgmental approach to the conversation. For people of all abilities, sexuality can be crucial to identity while also sometimes contributing to psychological distress. Sexual health is one of the most notably altered changes affecting men’s quality of life after a traumatic spinal cord injury. Often, it requires the person to rediscover their sexuality with the help of a diverse support system, including caregivers such as yourself.

In order to provide support for your patient it may be useful to first understand the complicated biology at play. Erection, ejaculation, and orgasm are controlled by separate regions of the spinal cord. Therefore, the type and level of the spinal cord injury as well as the amount of time since the injury occurred will likely determine your patient’s sexual functioning. Erections can be categorized in two ways depending on the source of arousal:

• Reflexogenic erections: brought on by physical stimulation and controlled by nerves in the sacral segments (S2-S4)
• Psychogenic erections: brought on by erotic emotional or mental stimulation, and controlled by nerves in the thoracic and lumbar regions of the spinal cord (T11-L2).

If the spinal cord injury affects the sacral region (S2-S4), psychogenic erections become the dominant source of erections. On the other hand, in spinal cord lesions above T10, nerves in the psychogenic region fail to respond and, therefore, the reflexogenic erection becomes more dominant. Ejaculation, or the discharge of semen, is primarily controlled by nerves located at the L3 and L4 spinal segments and is the most likely retained function in those with penises with spinal cord injuries. Ejaculatory rates vary greatly and are dependent on several factors. However, people with penises who experience spinal cord injuries may still have orgasms.

Most people enjoy some form of sexual activity or sensuality, regardless of ability. However, it’s natural for a person to feel anxious, angry, or distressed after the loss of their previous sexual ability. Feelings mixed with continuous pain or medication can negatively influence the libido. Discovering sexuality as a person with disabilities often requires the courage to experiment with new positions and techniques including fantasy role-play or physical touch in alternative body parts such as the anus, rectum, ears, and nipples. For some people with penises, there are options available to help achieve erections, including penile injections, surgical implants, a vacuum pump, and erectile dysfunction medication. If erections aren't sustainable or strong enough for penetrative sex (and also if they are), they may consider exploring new ideas of sexual expression. There are still plenty of ways to give and receive pleasure, including through kissing, bathing, and oral sex. Regardless of physical approach, encouraging open and honest communication between partners will help your patient find what works and feels best for himself and others. If future conception is a concern, there are techniques available to facilitate this process including methods of penile vibratory stimulation (PVS), electroejaculation (EEJ), and surgical sperm retrieval. However, never assume that an injury causes infertility or makes a person incapable of catching and spreading sexually transmitted infections (STIs). The use of protection, such as a condom, may help protect against unplanned pregnancy and STI transmission.

It may also be helpful when providing support to think about the language you use. Open communication plays a large role when discussing sex, so it's critical to think about other ways you're communicating with him as well. For example, you referred to him as a quadriplegic and a gunshot victim. Are these terms that he uses to identify himself? If they are, continuing to use terms that he uses can be helpful as you work in your role as a caretaker. Evolving with his language can continue to show your concern, build trust, and that you're looking to better support and understand him. If he uses different terms, adopting the terms he uses could help increase the trust between the two of you. If he doesn't use any particular terms, using terms that put the person first (a person living with quadriplegia) can help to remind yourself and others that he isn't defined by his condition. This can also help when it comes to conversations about sex, as it can be a reminder that a spinal cord injury doesn't have to mean that sex is no longer a possibility.

If a discussion about sex is initiated, it may be helpful to approach his concerns using the P-LI-SS-IT model of intervention established in 1976 and recommended by the Consortium for Spinal Cord Medicine:

• Permission (P): Caregivers permit patients to bring up sexual issues or concerns in a supportive environment. Normalizing the discussion of sexual health may help to reassure the individual that they aren't alone in their concerns.
• Limited information (LI): Provide factual information about the person’s particular sexual issues. This includes offering information about services that can help.
• Specific suggestions (SS): Encourage your patient to speak with a qualified healthcare provider that may help him to address specific concerns. This may include recommendations for therapy or prescribing medications. 
• Intensive therapy (IT): Seek highly specialized treatment from dedicated health clinicians or other specialists available. 

The nature of sexual health with spinal cord injuries is complex and is often addressed by incorporating multiple disciplines using the guidance from health care providers and mental health professionals such as primary care providers, occupational therapists, psychologists, sexual therapists, social workers, and more. Various resources may provide you with additional information to help. These include the Spinal Cord Injury Information Network, the Christopher and Dana Reeve Foundation, and the film (Sex)abled Disability Uncensored. Being open and honest with your patient can help him have more positive sexual relationships. Here’s to a healthy and satisfying sexual life for all!