An unfiltered experiential guide to “getting it working” again - Blog - Reeve Foundation

by contributing writer Brooke Pagé, WAGS of SCI

How do we have sex again? Can we even HAVE sex?

This was the question that sneakily entered my mind two weeks into my husband’s accident that left him a C4 Quadriplegic. I found myself feeling guilty about asking myself those questions… and even thinking about them! After all, we had so many more important things to think about - like what the heck we were going to do with our lives after a devastating injury like an SCI had happened to my husband. Sex should have been the last thing on my mind - but it wasn’t….

He was devastated in general about his “lack thereof” function down there. He would talk to me about how not only did he lose his independence and physical function, but also his ability to have a “normal” sex life. He was worried he wouldn’t be able to satisfy me again physically and that I would wander off into another man’s arms. He worried he wouldn't feel that connection again, within himself that made him feel like “a man.” Let’s face it - losing the ability to feel your penis, as a guy, would be seriously heartbreaking. I felt for him, and I reassured him that whatever happens, I would not leave him just because of the sex not being the same as it used to be. I would tell him we would work on it together as a team. Meanwhile, in my mind, I had so many questions, and I had no clue what I was doing or saying in that department.

Little did I know that it would be quite the journey to “get it working again” post spinal cord injury- full of twists and turns, surprises and frustrations. For us as a couple, our journey was all about coming to terms with the fact that his penis may not ever work like it used to. We decided together to work with what he does have as far as sensation and ability post-injury while embracing our new sex life “normal” (whatever that means) for what works for us.

The First Appointment (AKA the “we had no clue what was happening” session)
The first time we discussed sex post SCI was a bit of a whirlwind. Once my husband was out of the acute phase of his injury, and well into the in-patient rehabilitative stage, we had the opportunity to visit a sexual health nurse together. What would she say? The appointment was made for us by his team at rehab, and he was dreading it. As for me, I had no clue if he could even function “down there” or how it would work post-injury. He had told me he would get spontaneous erections out of the blue or whenever the nurse would touch his penis to deal with his catheter but could not control when they happened like he had before.

When we first arrived at our appointment, she explained to us the process of getting back into the swing of things - and it was all a blur to me. There were pills, needles, medications… so many types and styles of vibrators and toys. She explained that it was up to us to experiment and that these were the options of what to try. I learned very quickly that this was not just going to be a “one size fits all” sort of sexual rehabilitation - it would be a process of trial and error and working out the kinks. We left feeling confused and a bit powerless. We couldn't start the process of experimenting until he was back at home (I wasn't cool with trying to use a vibrator on him while he was still at the hospital LOL), so we decided that instead of making ourselves feel even more overwhelmed than we already were, we took some notes, and put the sex discussion on the back burner until we were both in a better place.

Trial and Error: Pills and Initial Experiences
We learned early on that the first thing to try when experimenting was to see if he could sustain a “working” erection with just manual stimulation (or vibration) with or without cock rings (an elastic ring placed at the base of the penis to help hold blood flow in the penis). Some quadriplegics can hold their erections this way, and for those who can, bam! But for those who cannot, the next step would be to try a medication like Cialis or Viagra.

There are two types of these medications - long-acting and short-acting. We learned that this period is all about trial and error. We, as a couple were really interested in trying everything together to see what would work best for him with the least amount of side effects. We tried the long-acting Cialis, which is a daily dose. My husband found that it caused too much of a “rush of blood to the head” causing him headaches and a slight reaction similar to AD. He didn’t enjoy the feeling, so he moved to the more immediate acting dose of Cialis. This medication still caused a bit of a headache and made him flushed - all of which the doctor said was “normal” for a quad and just to continue monitoring him. We decided we wanted to try something else to see if it was more effective, so we then made another appointment at the sexual health SCI clinic to start our next “step” in this journey.

The Penis Pump
Another way a quadriplegic can experiment with sustaining an erection is to use a penis pump. No, it’s not the Austin Powers variety - this is a medical-grade vacuum pump that is available through most medical supply distributors. When we found out about this, we were intrigued - our sexual health clinician said that using the pump daily to force blood flow to the area is great for “rehabilitation of the penis.” Hey, if you work hard to rehab other muscles, why not work to rehab your penis as well?

We were instructed to purchase the pump (because it’s classified as a medical device, most insurance companies are open to covering it with a doctor’s note) and play around with it on our own time. She demonstrated how to use it with a cock ring to hold the erection after the penis has been “pumped up” and sent us home with a DVD and instruction manual. We were ready for a night of “Pump and Chill”!

After a week or so of playing around with the pump, we came to some of our own conclusions on it. We found this device to be helpful for the rehabilitative portion of its usages, but we still were not 100% satisfied with the results. We used it with and without Cialis - and because he still did not like the way Cialis made him feel, we decided to move forward with the next option. Keep in mind, every single SCI patient is different, so just because one thing works for some, it may not work at all for others. Therefore, the trial and error/experimentation portion of your sexual health journey is so important. And, it was now back to the drawing board for us.

The Needle
We arranged another appointment with our sexual health Clinician at the SCI clinic a month or so after our last session, to update her on our progress, and hear about the next steps we could take. She informed us that the next thing we should experiment with is the “Needle” AKA penile injection therapy. These injections are commonly prescribed by doctors for able-bodied patients who have had prostate cancer, so there are different kinds that are all readily available, and they're widely known about by most doctors. She explained to us that they're effective and do not have the side effects that taking a Cialis would on blood pressure.

My husband was scared.

All he could think about was “needles around his penis” and how he was so uncomfortable with that portion of the treatment. Our clinician assured him that with practice, I would be so good at it that he wouldn't even notice any injection. She showed me how to use it properly and gave me the rundown on how to spread out the injections for effectiveness. Your doctor will go over the details, but basically, you can do it 15 minutes before any sexual activity and be presented with an erection without any manual stimulation.

When he saw the needle, he became more comfortable with it because it was an extremely short butterfly needle that he could barely see. I practiced on a banana in the clinic, and after he got his reassurance from the nurse a hundred times, we got the prescription and syringes and went home for a night of playing around with injectables! After a few weeks of trying different doses and seeing how they worked with his body, we became frustrated because they were not working as well as we had thought they would. We had heard from others in our SCI community that these injections were pretty much a sure thing, however, for us, they were hit or miss.

Shifting The Focus To Ejaculation
We were both frustrated, to say the least. He was mortified that things were not working down there as they should without using medications that have side effects, and I was trying to help him to not be so down on himself. After a few days of talking, we decided to make another appointment to see the clinician again but also see the SCI doctor who specializes in male sexual health after SCI. We wanted to shift our focus in another direction besides figuring out how to make him have a sustained erection, and forcibly put our minds elsewhere. While we did not have any intention of using this technique to have children or store sperm, we DID want to see if he could ejaculate - and I wanted to learn the process so we could try it at home.

“Vibro - Stimulation” In A Clinic Setting
Building up the courage to go into the clinic for a demo “procedure” called Vibro-Stimulation by a doctor was something that took a lot of mental strength for my husband and me to do. Especially him! Being exposed to two medical professionals you hardly know, then having them help you to ejaculate is something not many men would not go through with voluntarily. We knew that if he did this, we would learn if he COULD ejaculate, exactly what to use on him to get there, and how to do it properly. We both took deep breaths and arrived at our session with open (but nervous) minds.

The process of this is actually quite simple: they use a high-powered vibratory device on the underside of the tip of his penis (where most of the nerve endings are) to promote ejaculation. Seems simple enough right? They told us they do several times per day to help couples who want to conceive and try at home on their own, so they were happy to do it for my husband.We were surprised to find that ejaculation after spinal cord injury IS possible with the right “tools.” It was easier and quicker than we thought, and after it was done within five minutes, my husband was surprised to find that his spasms had disappeared. They informed us that ejaculation helps to keep spasms away for up to eight hours after the fact, so regular ejaculation is a great therapy for men who have intense spasms and tone throughout the day. While we did not have their exact vibrators at home to use, we were told to start experimenting with different types of vibrators to help find one that works for him as it had at his appointment.

Good Vibrations
After his successful appointment, I became obsessed with finding a good vibrator that would work on him at home as well as it had at the clinic setting. The one that they used at the clinic was the Ferticare Vibrator that is classified as a medical device, but is also over $1200 -definitely a bit out of reach for us without saving up. They gave us some advice on what we should try at home first before investing in something so expensive - as it can be done without using something so pricey. Here are some guidelines:

- Stay away from sex toy shop vibrators - usually, these vibrators are not strong enough to cause ejaculation. You want something that is very powerful with strong pulses.

- Try back massagers first. Inexpensive ones like the Hitachi Magic Wand and other wands specifically, for back and shoulders, have more powerful stimulation ability for deep muscle release. Don’t be afraid to try powerful and look on Amazon!

- Start inexpensive, and try it. Sometimes you could get lucky with a good brand that is cheaper in price. It’s better to spend less at first in case you find the vibrator that works for you!

- Always have a BP cuff and monitor for AD symptoms! If you’re trying this at home, don't be discouraged if ejaculation doesn’t happen with your first vibrator purchase. Like I said above, you have to use something with super strong and powerful vibrations for it to work, and most of the time the first one isn't THE one.

Some Conclusions.
After over three years and a lot of experimenting, we were able to find something that works for us and our lifestyle. We still have a lot of learning to do, and I am not going to say that our sex life is exactly where we both want it quite yet. But who’s is with this injury? Sometimes being realistic and giving yourself a break - while not putting so much pressure on one another - is the answer.

As caregivers, we have a lot on our minds - and we are not alone in that. Doing all the things we need to do during the day while caring for our partners, can make “getting in the mood” overwhelming. I know firsthand that getting intimate at the end (or beginning) of a long day is not something I feel like doing all the time, especially when there is stress involved. Not only that, my body and mind simply won’t let me sometimes! Experimenting with sex is not something you can do when your mind is elsewhere, and you’re stressed to your limit. I often find myself thinking that I “should be” initiating sex, but then I realize that just that thought in itself is making me even more stressed. Not worth it!

I have found over the years that although I may want to have a “normal” sex life (AKA what able-bodied people define as normal), I always question what “normal” is anyway? I have defined and redefined OUR normal repeatedly, and I can honestly say that while it may look different than before, we are now closer than ever. Things are exciting, but in different ways, than they used to be. We are still both satisfied, and all these processes you go through together brings a certain type of vulnerability between two people that helps you to grow as a couple in love.

How you ask?

Finding ways to be intimate without the actual physical act of sex is a welcome challenge for me and us as a couple. It brings you closer and helps you to communicate with one another more effectively. I have found personally that getting creative and “fitting in” intimate moments at different times during the day helps to keep that spark and curiosity alive in our relationship. Using things like words, touching, and romance can be just as enticing as physical sex - especially when it is with someone you truly love and appreciate. Without getting into too much detail - we have a roll-in shower, and for us, using shower time as a time to get intimate is something we both find works well for us. He's sitting in his commode - I’m showering him - it just works well. If anyone has ever tried the naughty nurse scenario that can do the trick as well. If you must do your daily caregiving duties, why not put in some effort to make it extra exciting.

I am not saying that I am superhuman and have this “Quadwife /Sexy Life” thing all figured out. I am not that type to claim I can act sexy all day long, while still looking after myself and maintaining every other aspect of our life as well as my full-time caregiving duties. That is not accurate, and even writing that sounds exhausting. I can, however, say that I am obsessively interested in finding our new balance of being sexual and dealing with this injury, in whatever works for us. Every couple is different, and finding your groove CAN be something that is enjoyable and educational if you make it fun.

Sending you positive, loving vibes on YOUR own journey in sexuality post-SCI!

- Brooke Pagé, WAGS of SCI

PS: If you have any questions or comments about sex and sci, feel free to email me at wagsofsci@gmail.com