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One of the most frequently asked questions I’m asked - once a person gets brave enough - is how do you have sex? Unfortunately, historically society has desexualized wheelchairs users and others with disabilities. But, the truth is people with disabilities have the same sexual needs as anyone else. Losing the ability to move body parts does not mean that the need for sex and intimacy is also lost. Every human needs relationships, intimacy, and touch in their lives. It's been found that a lack of sexual contact and intimacy can lead to depression. So while sex after a disability is different, it is wonderful if you are patient and creative.

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People with a newly acquired disability and their intimate partners have many questions about how sex will work now that their bodies are different. When the spinal cord is damaged the way information travels from the brain to the sex organs is different. The effect on sexual response depends on the level and severity of the injury. The good news is that a lot of sexual pleasure happens internally, not externally. Orgasms are a reflex response. However, many times information about sex after SCI is not taught by the inpatient rehabilitation staff. Inpatient rehabilitation stays are often less than a month, and a two to four week rehab stay does not give medical professionals much time to teach the essentials about how to take care of basic bodily functions - much less to address sex. This leaves many people to have to learn by the information found online or by trial and error. Yet, studies show that the better the sex education a person has after injury, the better the sexual satisfaction a person reports later. While rehabilitation ceners work to improve their sex education, I can point you to some useful, reliable online resources. Ultimately, communication and exploration with your partner will be key to finding what works for you.

Autonomic Dysreflexia
One very important health concern to consider when engaging in sexual activity with a spinal cord injury is the risk of autonomic dysreflexia (AD). AD is a sympathetic nervous system response to pain or irritation below the level of injury and is more of a risk with higher level spinal cord injuries. Common reasons for AD are skin irritation, constipation, kidney stones, full bladder or UTI. Ejaculation or orgasm can also cause AD. AD happens more commonly in people withT6 and higher level spinal cord injuries. If you experience a sudden headache, sweating, goosebumps, stuffy nose or trouble breathing during sexual activity, you should stop what you are doing immediately. Autonomic Dysreflexia causes a spike in blood pressure that can lead to seizure, stroke or cardiac arrest. If you have any of those symptoms, sit with your head up and your feet down to lower your blood pressure, loosen clothing, and empty your bladder. If the symptoms don’t subside in 5 minutes, seek medical attention. Your doctor may prescribe a medication so as to drop your blood pressure immediately. Pay close attention to any symptoms you may experience and discuss the possibility of Autonomic Dysreflexia with you doctor prior to engaging in sexual activity.

Positioning
One of the main challenges you face will be positioning. For people with contractures or severe spasms, finding the right position is important. There are foam wedges that are designed to make things easier, and there are companies that offer washable waterproof covers for them. Pillows also work to help with positioning. There are also different straps, slings, swings and lifts that can help with sexual positioning. Lauren Varriale, MS OTR/L is an occupational therapist whose primary specialty is  neurological rehabilitation, specifically after an SCI. Lauren works with couples to help them regain intimacy utilizing positioning and adaptive equipment. She did a presentation available on YouTube about how people living with an SCI can regain intimacy. You will find lot of specific links to products and information in Lauren’s presentation. Another important reminder is to check your skin after intercourse. Make sure your partner is not putting too much pressure or causing too much friction in one area. Using satin sheets can reduce friction and skin irritation.

Neurogenic Bowel and Bladder
Another major concern, for both men and women living with spinal cord injury, is having an accident during intercourse. This can be avoided by completing your bowel program and emptying your bladder just before sexual activity. Many people also limit their fluid intake prior to sex, especially alcohol. Alcohol is a diuretic and it irritates the bladder. You can also get a waterproof blanket or sheet to put down. Preparing ahead of time will help you to feel more confident.

Women
Contrary to popular belief, women with an SCI can achieve an orgasm - even if their injury is complete. Women can utilize manual and vibratory stimulation to improve their sexual response. However, decreased lubrication can be an issue for females with an SCI. While water based lubricants are a popular option, they might need to be reapplied more frequently, and can cause a yeast infection. Silicone based lubricants last longer, but these can’t be used with silicone based sex toys. Oils are good for massage and on the outside of the body, but should not be used for vaginal lubrication.

It should be noted that a woman’s ability to get pregnant does not change after spinal cord injury. If you are not wanting to get pregnant, make sure you use contraception. As some oral medications for birth control increase your risk for blood clots, make sure you discuss this with you doctor. Click here to read my article about spinal cord injury and pregnancy. Also, New Mobility magazine featured an article written by Regan Linton, Women’s Pleasure, click here to read it. The article is full of valuable information about how to embrace your body and your sexuality while living with a disability.

Men
According to an article in the Journal of Spinal Cord Medicine many men have difficulty with erection for one to two years after injury. Eighty percent of those men will regain the ability to get an erection in the first few years post-injury. Even if a male is unable to ejaculate it is still possible for him to achieve orgasm. Men can use oral medications, vacuums, injections, urethral suppositories or implants to achieve an erection. There are also vibration devices that are set to a specific frequency and amplification that have been proven to stimulate ejaculation in men with certain spinal reflexes still intact. If you choose to use a medication for erectile dysfunction (ED), remember that these medications can cause a severe drop in blood pressure. If you begin to experience autonomic dysreflexia symptoms, ED medications could be the cause if you have ruled out bowel, bladder and skin irritations. Consult with your physician to discuss possible complications prior to sexual activity. Dr. Mitchell Tepper has a video for men with SCI where he discusses sexual positions for men with a spinal cord injury. He stresses the importance of creativity, adaptability and keeping a sense of humor.
 
Resources
  • Dr. Mitchell Tepper: Dr. Tepper broke his neck in a diving accident while in college. He now worrks as a sexual educator and counselor dedicated to helping men and women living with disabilities, and health professionals, understand the full potential of sexual response and expression for people with disabilities. Dr. Tepper's goal is to end the taboo around sex and disability. Click here to go to his website.
  • PleasureABLE: Sexual device Manual for Persons with Disabilities
  • Guide to Getting it On: A complete guide to sex that is extremely informative, but not specific to people with disabilities.

Interview with Hilary Muehlberger

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Hilary Muehlberger has a T12 spinal cord injury sustained in a car accident in 2015. She is a Medical Supply Account Manager for Numotion, and the reigning Ms. Wheelchair America 2020. Ms. Wheelchair America is a non-profit organization that has been around since 1972 and the winner is chosen by her history of advocacy for the disabled community and the ability to articulate her platform. I had the privilege of being Ms. Wheelchair America 2019, and I passing the crown on to Hilary. Hilary and I have a great friendship and she agreed to answer a few questions about how sex changed for her after her spinal cord injury.

KR: Were you afraid to ask questions about how sex would change after your spinal cord injury?
HM: Honestly, it wasn’t my first concern. I didn’t really start thinking about sex until about a year post injury. When I woke up after the car accident, the first thing the doctor told me was that I could still have kids, and I was satisfied with that.
 
KR: How did you learn about how to have a satisfying sex life after your SCI?
HM: I started with Google and found a ton of videos on the internet from bloggers in chairs that showed how they adjusted positioning. I also worked really closely with one of my PTs, and she gave me suggestions on how to explore my body, and where I had sensation. It was a process of probably about 6 months to a year of me getting comfortable and just allowing my body to react.
 
KR: Did you have less sexual drive after injury?
HM: I had a lot of issues with the different medications that I was on that were really negating my sex drive. It wasn’t until I started dating again that I became much more concerned. I went to see a psychiatrist and we worked together to find the right medications to keep my body and mind healthy without limiting my sex drive.
 
KR: Do you have any advice about sex for people with new spinal cord injuries?
HM: If you don’t try, you will never know. There is an amazing community of peers with similar ability levels who you can have a conversation with and maybe find some different options to try. Be patient, this is a process. You may not climax the first time, and that is okay! Just keep trying and find something that works for YOU.
 
Sexual intimacy is such an important part of everyone’s life and that does not change because of a disability. Sex after a disability just takes more planning and creativity. When a person loses sensation in one area of the body, other areas become more sensitive. Areas like your earlobes, neck, and chest become much more sensitive. Experimenting alone is a good way to find what works for you and will increase your confidence with a partner. Talk to your peers with disabilities about what works for them. Your occupational therapists are another great resource for information. 

Most importantly, discover your own unique path to personal pleasure and a satisfying sex life.
Karen Roy, Numotion Brand Ambassador

Author

Karen Roy, Numotion Brand Ambassador

Karen Roy is a Licensed Clinical Social Worker with 20 years of experience. Most of that time was spent as a Case Manager for an in-patient rehabilitation hospital. She was the victim of an armed robbery in 1987 and has been a wheelchair user for the last 31 years. She had 3 kids after her injury. Caroline, Austin and Joseph are all in currently attending college. As Ms. Wheelchair America 2019 Karen’s platform was “Stand for Life”. Her platform is about the use of standing technology and other devices that improve the health and well-being of people with disabilities.