Sex Part One: Answers to the Questions I Had When I Was Newly Injured

A chalk board with Questions and Answers written on it.
Oct 27, 2022 | by Kayley Lawrenz

I sustained my spinal cord injury (SCI) the day after I turned 16. I had some sexual experience, but I also had a lot more to experience.

I got into a relationship very soon after my SCI with someone I had started hanging out with shortly before my injury.

I had many questions about sexual intimacy that no one on my medical team could answer. My medical team gave me a book that had a chapter on sex and SCI, but I could not handle it on my own due to limited hand function, and I wanted to read it alone. I did have a long appointment focused on sex after SCI with my doctor, who specializes in these topics. However, the appointment was very clinical, focused on what sexual experience I had before my SCI and the changes I needed to know about. Therefore, I left the appointment with even more questions that no non-disabled adult could really answer for me. Luckily, there are many wonderful people, who have lived with an SCI for a while, and who volunteer to mentor newly injured individuals. I had met a few since my injury, but there was one young woman who I thought would be perfect to talk to about sex. She is at a similar level of SCI to me. She was injured at 16 and was in her mid-twenties at the time I needed to talk. She was married (and still is) and had started a family. I also just really liked her. She spent an afternoon with me, answering all my questions and being incredibly open with me about her own sexual experience. I still cannot thank her enough for how helpful she, and others like her, have been in my life since experiencing my SCI.

Living with an SCI for over nine years and getting to know so many others who live with an SCI, I have learned a lot about sexual intimacy and SCI. Therefore, I would like to use this blog to compile what I have learned and do for you what this young woman did for me.

So, this will be a series of blogs discussing common questions and important things you need to know about sexual intimacy after experiencing an SCI. I will discuss:

  • Physical sensation (part one)
  • Bowel and bladder control (part two)
  • Sex and autonomic dysreflexia (part three)
  • Spasticity and sexual positions (part four)
  • Lubrication and orgasms (part five)
  • Contraceptives (part six)
  • Summary of tips (part seven)

I want to add a disclaimer before jumping into my blog. First, because I have female genitalia, this blog will likely be more helpful to others with the same genitalia. I will discuss things that will apply to you regardless of your sexual identity (e.g., female, male, or intersex). However, there are some things that I cannot really answer for those of you with male genitalia.

Physical sensation

After sustaining an SCI, you often have an altered ability to detect physical sensations to touch. For example:

  • You may have areas of heightened sensitivity to touch, especially in areas above the level of your SCI.
  • You may be able to recognize physical touch but not register hot or cold temperatures or vice versa
  • You may have lost all sensation of touch and temperature below the level of your injury, or you may have no change in your sensation of touch and temperature.
  • You may not be able to feel pain in the same way.
  • You may feel dull sensations but not recognize sharp sensations (e.g., you may feel a needle, but it is dull and not painful)

I, myself, have spotty sensation. So, many areas above my injury level are more sensitive to touch, and some below my level of injury are the same as before my SCI. I have other areas I can feel, but the sensations are different, and some areas have no physical sensation. Additionally, I have a minimal ability to recognize temperature. In my genital region, I have some areas that feel the same, some that feel different, and others where I have no sensation. It is also difficult for me to feel how wet I am.

These differences in one’s ability to feel touch below the level of their SCI often depend on whether they have a complete or incomplete injury to their spinal cord. Additionally, your physical sensation will likely change, especially in the first two years after sustaining an SCI.

Effects on sex

The idea that typical physical sensation, especially in the genital region, is necessary for someone to enjoy sexual intimacy is ridiculously prevalent in society. There is a belief that if you cannot feel sex like someone who does not have any nerve damage impacting their genital sensation, then sex is pointless.

Furthermore, many people believe that if someone does not or cannot orgasm, then sexual intimacy is disappointing. This perception is a narrow-minded and inaccurate way of viewing sexual pleasure that focuses solely on what many think is the standard of good sex, which is “perfect” sexual performance.

However, this view discredits the importance of intimate connection, sensual touch, emotional pleasure, and the power of fantasies, imagination, and all other sensory information (sight, sound, taste, and smell). All these factors can heighten a sexual experience. This perception also ignores all other erogenous zones. In other words, the other parts of your body that often provide sexual pleasure (e.g., neck, lips, chest, nipples, head, scalp, arms, hands, etc.).

I have learned from my own experience and the experience of others I know who have an SCI that sexual intimacy is still delightful, regardless of one’s physical sensation. It seems that having a good sex life is less about physical sensation and more about:

  • Being comfortable with your body.
  • Focusing on fostering pleasure and intimacy instead of focusing on erections, the ability to lubricate oneself naturally, and reaching orgasm.
    • Try to clear your mind, be in the moment, focus on the pleasurable sensations you are experiencing and your connection with your partner.
    • Concentrate on pleasure by touching, holding, massaging, kissing, and orally stimulating each other.
  • Having a high awareness of your own sexuality.
  • Having an open mind and a willingness to experiment.
    • Do not be shy about bringing sex toys into the bedroom or heading into a sex shop with your partner. I do not think you will regret it!
    • Consider sharing your fantasies and desires with your partner.
  • Involving all senses in your sexually intimate moments.
    • Consider looking at arousing images and videos together.
    • Consider incorporating body oils, massage, incense, candles, foods, and perfume into your sexually intimate moments.
    • Consider incorporating a lot of eye contact to increase your emotional connection during sexual intimacy.
    • Turn on those lights!
  • Understanding that not every sexual experience will be “perfect.”
    • That magical first time does not exist. A good sex life takes time and practice with your partner; even then, every time will not be perfect. Try to avoid feeling discouraged, putting too much weight on each experience, and having high expectations for yourself.

    Conclusion

    I hope you have learned a lot about physical sensation and sex after SCI in part one of this series. I hope that I answered some of your questions and calmed your concerns.

    I welcome you to check out the rest of this blog series! In part two, I will discuss how SCIs impact bowel and bladder control during sexual intimacy.