Help Desk → Health and Wellness after SCI → Sexuality and SCI/D Resources → Overview and General Resources

8.1. Overview and General Resources

Disclaimer:

Content in this section is intended for adult (age 18+) educational purposes. United Spinal Association bears no responsibility for the accuracy, legality, or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content. Information about a therapy, service, product, or treatment does not imply endorsement and is not intended to replace advice or directives from your healthcare provider. There is always a risk with any type of sexual activity, speak with your healthcare provider about options to maximize your safety.

General Overview

While individual function, activities, and interest levels may differ, sexual health, expression, and intimacy remain an essential part of people’s lives after SCI/D (Spinal Cord Injury/Disease). Humans are sexual beings, and disability can often alter how we see ourselves as individuals and our roles within our families and communities. Each individual’s sexual function is dependent on their level and completeness of injury as well as other personal and medical factors. However, while some aspects of physical sexual function may change, there are many ways people with SCI/D can express themselves sexually.  The resources throughout this Knowledge Book will help you learn more.  

The risk of pregnancy for women with SCI, and the risk of sexually transmitted infections (diseases) for all remains the same as before an SCI/D. Discuss options for safe sex with your clinicians. If you are not planning to become pregnant, speak with your healthcare provider about potential birth control methods.  There are a number of medical considerations to take into account before any sexual activity. These issues are discussed in more depth in section 8.3 Medical Considerations within this chapter.

Below you will find a number of resources related to sexuality and spinal cord injury.

Model Systems Knowledge Translation Center Factsheet: Sexuality & Sexual Function After SCI
The MSKTC provides health information based on research evidence and/or professional consensus and has been reviewed and approved by an editorial team of experts from the different Model Systems. This factsheet covers sexuality, how SCI impacts sexuality and dating; and general understandings of sexual arousal, orgasm, and fertility. (2015)

Mount Sinai Hospital: Sexuality after Spinal Cord Injury (2017)
This video archive and website is a resource for people living with spinal cord injury, their partners, and the healthcare professionals who treat them. The videos were collected during a one day medical professionals' conference and a two day consumer conference at Mount Sinai Hospital in New York (a Spinal Cord Injury Model System Center). Topics include information related to sexuality after SCI including: sex, love, and intimacy; dating and relationships; well-being and self-esteem; communication; adaptive devices and sex toys; orgasm, erections, and fertility; medical conditions and their impact on sexual activity; managing bowel and bladder routines; talking to your doctor about sexual activities; sexual positioning; facilitated sex and conversations with care attendants.

Spinal Cord Medicine: Sexuality and Reproductive Health in Adults with Spinal Cord Injury 
Consortium for Spinal Cord Medicine and Paralyzed Veterans of America (PVA) publication on sexuality and reproductive health for adults with SCI covering the range of topics including: sexual and reproductive health; sexual education; sexual response and enjoyment; female reproductive health and fertility; male fertility; physical and psychological considerations during sexual activity; lifestyle and relationship issues; and resources. (2011)

SCIRE Community: Sexual Health After SCI
An overview of sexual function after SCI and options for management from the Spinal Cord Injury Research Evidence (SCIRE) Community (2018). SCIRE Community was developed by a team in the Rehabilitation Research Program at GF Strong Rehab Centre in Vancouver, BC with the SCIRE Community Working Group which consists of 19 community members. 

Sexual Sustainability: A guide to having a great sex life with a spinal cord disorder [Kindle ebook], Author- Dr. Marcalee Alexander
If you or a loved one have a spinal cord disorder or injury, this book is for you. Here, in a concise format, you can learn how to maximize your sexual responses and capacity for orgasm. In a straight-forward, simplified format, this book will give you the help to understand what issues can positively or negatively impact your ability to experience sexual pleasure. This book is an important read for anyone who has a spinal cord disorder or loves someone with a spinal cord disorder. (2017 Also available in Spanish)

United Spinal Association: Webinar: Sexual Sustainability After SCI  
Dr. Marcalee Alexander is known internationally in the field of Sexuality and Spinal Cord Injury. In this presentation, she provides a simple recipe for you to consider your own sexuality after SCI, what your potential is, how our unique backgrounds affect us and how our medical care may be impacting our ability for sexual satisfaction. She discusses issues of aging and its impact on all of our sexual lives. (2018)

New Mobility Magazine Articles

In addition to the article below, New Mobility often publishes articles related to dating, relationships, intimacy and sex. Consider searching their archives for other related articles. 

Female Function

For women with SCI/D decreased lubrication and difficulty reaching physical orgasm are the most common physiological changes. Lubrication with arousal can be impacted by the level and completeness of injury. Using a water-based, non-petroleum lubricant like K-Y Jelly can help. While some may still be able to experience orgasm, it may take more stimulation and may feel different than prior to injury. The ability to get pregnant does not change after injury unless there has been severe pelvic trauma. These issues are discussed in the following resources. 

Craig Hospital: Sexual Function for Women after Spinal Cord Injury (2020)

Women's Issues Resource Book

Related New Mobility Magazine Articles

Male Function

Male sexual function after SCI/D can be impacted in a number of ways. Men may have difficulty achieving or maintaining an erection (erectile dysfunction) or with ejaculation and orgasm. Depending on the level and completeness of injury, natural erections may still occur via either psychogenic (sexual thoughts or seeing/hearing something stimulating or arousing) or reflexogenic pathways (sexual or intimate sensation/touch). A reflex erection is involuntary and can occur without sexually stimulating thoughts. Reflex erections occur from direct stimulation (touching) of the penis and genitals.

There are various erectile dysfunction treatment options including devices (such as penile pumps discussed in Section 8.5 "Sexual Aids"), and medications. Medications used in the treatment of erectile dysfunction in men with SCI include oral medications known as PDE5is which help improve the quality of an erection (such as Viagra, Cialis, Levitra and others). These medications can not be used with nitroglycerin products, which are sometimes administered in the treatment of autonomic dysreflexia. Other medications used to treat erectile dysfunction after SCI include penile injectable medications (intracavernous drug injection), as well as urethral suppositories. The following resource and other resources on this page discuss several options for achieving and maintaining an erection, including some pros and cons of each.  Your physician can help you determine the option that is best for you taking your individual health circumstances and level of injury into account. 

Orgasm may function the same as prior to injury or be different, occurring with or without ejaculation. The impact of injury on ejaculation differs depending on level and completeness of injury. Retrograde ejaculation may occur, when the bladder sphincter does not close off at the base during ejaculation and semen enters the bladder. Retrograde ejaculation does not cause harm to you and the semen comes out with your urine. 

Craig Hospital: Sexual Function for Men After Spinal Cord Injury-injury (2020)

Fertility and Reproduction

See Fertility and Pregnancy Resource Page

The impact of SCI/D on fertility and reproduction can affect both men and women. Fertility for men is often impacted, due to changes in semen quality, ejaculation, and erectile function. These factors can make reproduction via sexual intercourse difficult for some. Some men with SCI may be able to get their partners pregnant, but many can not. You will still need to use birth control if you do not want to have children. Some couples choose to invest in fertility treatments to achieve conception. Speak with your healthcare provider about options to become pregnant.

Women’s ability to become pregnant does not change after SCI/D, but can be impacted if there is physical trauma affecting the pelvic area. If you do not want to become pregnant, discuss contraception options with your health care provider.   

Communication

Despite being a large part of the human experience, sex and sexuality can be considered culturally and socially taboo (restricted or prohibited). By including it into our narrative and speaking openly about it, we can help remove the stigma surrounding this topic.

With a partner

Discussing sensitive topics like sex with a partner can often leave you feeling vulnerable and open to criticism. Using clear, open communication with a partner can make discussions about sensitive topics more comfortable to navigate. Taking time to understand and discuss how your body functions, what you find pleasurable, and giving and receiving feedback is a great way to learn and strengthen a relationship. Conversations around sexual activity can begin by discussing consent, contraception, values and beliefs, frequency, etc.

Tips:

  • Be patient with yourself and others
  • Keep an open mind
  • Give honest feedback during sexual activity🡪 what feels good and what does not
  • Be mindful of your tone of voice and word choice
  • Make suggestions rather than complaints.

With your healthcare provider (HCP)

Bringing up the topic of sexual activity with someone who is not your partner can bring feelings of insecurity and embarrassment. HCPs specializing in SCI/D are often aware of the many health areas impacted by this condition. Taking a sexual history is an integral and important part of a regular medical exam or physical history. If, after prompting, your HCP is deliberately not addressing this area of health, referral to another HCP may be in your best interest. Rehabilitation professionals such as physiatrists (doctor of physical medicine and rehabilitation), occupational therapists, rehabilitation nurses, and rehab psychologists are often good sources of information related to sexuality for people with disabilities.

Tips:

  • Be direct and honest
  • Be prepared to answer questions about symptoms
  • Ask follow-up questions if you do not understand
  • If they do not have the answer to something, they can often refer you to someone who may 

*References found on page 8.6 Resources and References within this chapter.

 

 

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