Reestablishing relationships and life roles is a valuable part of recovery. Taking care of emotional health is as important as physical health and an important part of emotional health means resuming identity as a sexual being. This video explores what that means to both the individual with a SCI and their partner.
The Living With a Spinal Cord Injury series is made possible by a gift from David and Barbara Loeb.
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Narrator: Re-establishing relationships and life roles is a valuable part of your recovery after a spinal injury. It's important to take care of your emotional health as well as your physical health. For most individuals restoring emotional health includes resuming your identity as a sexual being and understanding and exploring changes in sexuality that may have occurred after your spinal injury.
Mueller: After having a spinal cord injury, it's really important to remember that while there might be some changes in your intimacy or your sexual relationships, that is still possible to maintain them. I get a lot of people who when I bring up sexuality will mention to me that's not a goal for them or they're older and they don't engage in sexual activities anymore. But I really try to stress to them that it's not just about you know penetrative intercourse or sexual activities, it's more about that intimacy. That could just be you and your partner in your hospital bed cuddling to watch a movie. It could just be holding hands, hugging, a massage. So, for people to really kind of broaden their viewpoint of sexuality to know that it's more about the intimacy and keeping that intimate relationship alive and going between you and your partner.
Ed: Like in our situation, we don't have intercourse because I can't. There's no feeling, nothing works. But we're still intimate with each other. We sleep together. We still cuddle and it's okay. I don't mind as long as she don't mind.
Bernadette: I had a hysterectomy very young. The other and that was because of years of endometriosis and stuff. So, for a long time we kind of learned that that's not the end-all be-all.
Noelle: When we started dating, I had to ask the question. I’m just like, “I didn't want to be rude,” but I had to ask, “You know, I don't know anything about it. I've never met anyone that has a spinal cord injury.” I nicely asked, “Well, does it work?” It’s probably the worst way to ask, but he told me, “Yes.” I was like, “Okay! Well, we know that works now.”
Brad: I think the biggest difficulty is probably the foreplay. Just trying to get in the mood smoothly. It's always just a little awkward in a wheelchair and I'll be running into furniture or I'll be falling and lose my balance. I’ll be like, “I need some help.”
Chris: Nothing worked. Nothing worked. I'm getting sponge bath by nurses and everything. I'm like, it's crazy. I remembered the day before my discharge. I talked to doctor. I’m like, “You know…’ He said, “This is what I need you to do. Go home and watch am x-rated video, if it doesn't work then I'll prescribe something for you.” Long story short, I went home, and it worked. I was like, “That was it.”
Zelette: It's just different. It is different, but it is doable. It may take a little prep you, may have to fit it in, schedule it. Because it's not spontaneous, it can't really be spontaneous. You have to prepare yourself for it. So that's a little different, but it's doable and we enjoy it so it works for us.
Narrator: The body becomes physically aroused through two different pathways. The psychogenic and the reflexogenic pathway. Psychogenic arousal happens as the result of sexual thoughts, images, or scents. Arousal signals from the brain are transmitted to the lower thoracic spinal cord and from there to the rest of the body. Injuries of cervical and thoracic spinal cord will affect psychogenic arousal. Reflexogenic arousal happens due to physical input or touch to the genitals or other arousing areas of the body. It is controlled by the sacral level of the spinal cord. It is independent from the brain and higher spinal levels. Injuries to the sacral spinal cord will affect reflexive genic arousal. Many persons following a spinal cord injury will have changes in their sensation. The best thing for an individual to do is self-exploration.
Berzins: Sensation will change it might be heightened above your level of injury or decreased in other areas. So, each person's injury is going to be very unique in terms of their sensation and their experience. So, through self-exploration you can kind of find out what sensation you have and what things are pleasurable. You may notice that with increased sensation, things above your level of injury become more pleasurable. So, touching, massages, that type of thing might be more pleasurable than they ever were before your injury.
Mueller: So, for patients that can be, you know exploring with scalp massage. Are your nipples more sensitive? For some people, the crooks of their elbows or under armpits can be a little more pleasurable. And then experimenting with different types of touch. So, if for you, you know a hard-firm touch doesn't feel good. Do you like something maybe a little soft, a little lighter? So, it's really just about trying out new things, problem-solving and just seeing what works for you.
Brad: At first there was more… I could feel these sensations and stuff, but it wasn't so much enjoyable. So, I had to learn how to kind of reprogram my mind to get pleasure out of it. Instead of, I guess, I wouldn’t think about it too much.
Narrator: Females may have reduced lubrication, which may require use of a water-based lubricant to assist with sexual activity. Males may have difficulty achieving and/or maintaining an erection, which may require external devices, medications, or surgery to assist with sexual activity.
Mueller: There's a lot of tools available on the market today and I think more so than there were even ten years ago. There's a lot of wedges and positioning devices and even a power wheelchair or a hospital bed can be used as a positioning aid for someone with limited mobility. There are also things to help maintain and achieve arousal for both males and females. There's things like vacuum pumps, penis rings, clitoral suction devices, vibrators, and the really nice thing about those items is that they're more available to people today. People can go online and purchase them. They don't have to worry about going into a store or if they aren't able to go into a store. With a lot of these different tools though, it is going to be important to discuss them with your doctor or with your therapist. Just to make sure that those tools would work for you before you spend money on purchasing a device. Just to make sure it's fit for the type of injury you have and also with the sensation and motor abilities you have. Before any kind of intimate or sexual activity, you want to make sure to empty both your bowel and your bladder. So that might involve even having to schedule some intimate times to make sure that you manage your cathing and that you manage your bowel program. This prevents any accidents from occurring during those intimate times. People with an injury at t6 or above are also at risk for autonomic dysreflexia during intercourse and that can be brought on by rougher activities, hard skin on skin contact, having a full bladder, sometimes even orgasm can bring that on if during intimate activities. If you feel that you're having an episode of autonomic dysreflexia. You should stop whatever activities that you're doing, wait for those symptoms to resolve, and then you can return to what you're doing. If that becomes a common trend, it is something that you want to talk to your doctor about.
Berzins: The first question is often times, “Can I have children?” Absolutely, the answer is yes. Especially if that was something before the injury that you were considering. There may be different things that you need to learn about or go through to do that, but these are all things that your rehabilitation team can talk to you about and help you through.
Mueller: For women, you can still get pregnant. It's just going to take more planning with a physician who specializes in fertility to kind of follow you along your pregnancy. As again, you might have changes in sensation and motor function. Men sometimes will have difficulty with ejaculation after spinal cord injury and may have decreased sperm motility. So, what that would mean is just following up with a physician who specializes in fertility in that area to help with insemination and fertilization.
Tyra: Well, I didn't realize. I remember, I was really emotional. My mom was like, “You're probably pregnant.” I’m like, “No.” I remember I was late for my period. She was like, “Just take a test.” The first test came out negative. So, I’m like “Okay, probably not pregnant.” But I remember, I was still very emotional, my period still didn't come on, I was urinating a lot. So, I finally decided to take another test and I was pregnant.
Mueller: So, you're still at risk for our all STDs and STIs following a spinal cord injury. The best form of contraceptive to use is a condom. For women, it's not advised to use birth control pills or IUDs, again because of risk of blood clots and sensory changes.
Allison: My sex life is fully gratifying. And again, through talking, I know that it is for her. One, it may be unconventional, you know as a lesbian couple, but again, you just have to be willing to work with your partner.
Melissa: I don't even really see the chair. Like I do, obviously I know it's there, but when you feel that way, a certain way, the love that you have for them, it's insignificant.
Brad: Never give up on it. Even when things seem hopeless, it’s not. You might be having the same situation if you weren't in a wheelchair. It's just a matter of finding the right person and connecting with them. So, once you do that, there's really the possibilities are endless.
Narrator: Listening, learning, asking questions, and following up with your Rehabilitation team will provide you with the best education and recommendations to assure you stay healthy and enjoy your sexuality and intimacy in whatever ways you choose.