Researchers and women with spinal cord injuries build a better understanding of sexual satisfaction

(Updated April 2011)

Loren Serano* enjoyed a great sex life with her boyfriend before her C3-4 spinal cord injury. After her accident, the prospect of resurrecting that intimacy was daunting. “When I first got out of rehab,” she says, “it would get really frustrating because he would get tired out trying to position my body, and I would be upset because I couldn’t do anything to help. Then we would both get mad and give up.”

Inhibited by the information that sex might stimulate bowel and bladder accidents, and discouraged by a lack of surface sensation, Serano wondered how to satisfy her sexual appetite, which hadn’t changed at all.

It’s not an uncommon scenario, according to experts like Dr. Marca Sipski-Alexander, who has done extensive research on arousal and orgasm in women with SCI (see “Reclaiming Your Health,” NM October 2011). “The potential for orgasm is still there,” says Sipski-Alexander, former chief of SCI services at the Miami VA and project of the South Flordia Model SCI System at the Miami Project to Cure Paralysis. But since popular belief is that the potential for orgasm is not there, “so many people with spinal cord injuries give up — they don’t masturbate, they don’t feel when they touch the surface, so they say, ‘What’s the point?’”

The point, says Sipski-Alexander, is that only the surface sensation disappears when you have a spinal cord injury. “Lots of internal sensations are still there,” she says, which accounts for menstrual pain, vague urges to go to the bathroom, labor sensations and other abdominal pain. “It’s my belief,” she explains, “that there might be some component of sensory function that relies solely on the autonomic nervous system and doesn’t require your brain to process.”

Her theory is supported by evidence that there is only one injury pattern that significantly impacts the ability to achieve orgasm: complete lower motor neuron injuries to the sacral spinal cord. In these injuries, even the autonomic nervous system is damaged, meaning women have no reflexes and no sensation in their genital area. “So it’s my belief,” Sipski-Alexander says, “that orgasm is a reflex and that as long as you don’t cut into that reflex arc like you do with that complete lower motor neuron spinal cord injury, the potential for orgasm is still there.”

It turned out to be true for Serano, now 35 and 14 years post-injury. “We weren’t even trying or anything,” she recalls of that night four years after her accident. “It was just like one minute we were fooling around and all of a sudden I got a big rush. He just kind of asked me, ‘What did I do right?’ I told him I had absolutely no idea. So we had to try again!”

*Names have been changed.

Just the Stats
If popular magazines give us any clue, a lot of women want to know how — and how often — their peers experience desire, intercourse and orgasm. The problem, until recently, has been that few major surveys included women with disabilities, much less focused on the intersection of sexuality and disability. Several recent studies, however, provide greater understanding of women’s sexual desire, activity, response and satisfaction.

In one large national study of reproductive health after spinal cord injury, researchers at the University of Alabama found that 67 percent of women report having intercourse after injury, compared to 87 percent before. A couple of factors turn out to be strong predictors of sexual activity: duration of injury and level of injury.

The study, which analyzed detailed questionnaires from 472 women, showed that 49 percent of women one year post-injury had sex, whereas 65 percent of women two to 10 years post-injury, and 76 percent of women 11 or more years post-injury did.

So who’s hooking up? Eighty-two percent of women with lumbar/sacral injuries, 70 percent with thoracic injuries and 62 percent with cervical injuries. Interestingly, extent of injury — complete or incomplete — has little impact on likelihood of sexual activity.

All three factors — duration, level and extent of SCI — significantly impact orgasm (see table), but some women in all groups report this level of satisfaction, so clearly they are not the only factors at work. Furthermore, 84 percent of women sexually active after injury report either genital or extragenital pleasure.

Source: Archives of Physical Medicine and Rehabilitation

One hundred and fifty-five women in the study had not had sex after injury. Reasons for abstaining were generally quite different pre- and post-injury: Two percent were uncomfortable with their bodies before injury, 17 percent after. Five percent said they had no opportunities before injury, 32 percent after. Twenty-six percent said sex was not important before injury, 54 percent after. And 29 percent reported “other” reasons for not having sex that included complications of SCI.

The complications that deterred some were reported by the sexually active group, but some fears, such as bladder accidents, were not particularly common (see table above).

Some complications occurred more often based on injury level. Dysreflexia was of course much more common among quads, although it was reported by some women with injuries below T6. Bladder accidents were most common among women with thoracic injuries (22 percent) and least common in the lumbar/ sacral group (7 percent).

What to Do
So sex isn’t the free and easy joy that perhaps it once was. What can you do to increase your desire and pleasure? Sipski-Alexander believes that Viagra holds considerable promise for women with various neurological causes of sexual dysfunction.

“The increase in arousal was across the board,” Sipski-Alexander says of women with different levels of SCI who took Viagra in a double-blind, placebo-controlled study published in Urology. She says that women with select injury patterns probably respond to the drug more — as in the case of men with SCI — but that will require further analysis. Women in the study showed the greatest changes in arousal when Viagra was combined with visual and manual stimulation.

And does it help with orgasm? “I didn’t study orgasm in that paper, but I have given people the drug off-label and they’ve noted that it improved their ability to achieve orgasm. It makes sense, but that’s something I’ve learned more from clinical experience than from that study.”

Janet Cheney,* 31 and a C6-7 incomplete quad, participated in Sipski-Alexander’s Viagra study. She’s pretty sure she received a placebo because she obtained a prescription afterward and felt a big difference in lubrication and sensation. “It was very difficult to obtain orgasm before,” she says. “It took a very long time and we had to come up with different ways of using lubrications. Now, with Viagra, it becomes an easier process.”

Does she recommend it? “Before women jump on the bandwagon — or before anybody jumps on the bandwagon to take a drug — I think you want to look and see if you have a good relationship and really understand your body in terms of how it’s performing. And if it’s not to your liking, it might be a very viable option.”

Interested? “See you doctor,” says Sipski-Alexander. If your doc’s skeptical, refer him to Sipski-Alexander’s study in the June 2000 Urology.

A new nonpharmacological treatment that has been FDA approved for the general population of women with sexual dysfunction may also improve sexual response in women with paralysis. Several studies show that the Eros Therapy, a prescription clitoral stimulation device made by NuGyn Inc., successfully uses gentle suction to increase blood flow, lubrication, sensation and orgasm in nondisabled women. Sipski-Alexander sees potential for women with disabilities and plans to study the device’s effectiveness for women with SCI.

And it probably goes without saying that the road to orgasm is paved with practice, practice, practice. Eventually Serano found the combination of activities that works for her: “A lot of stimulation to the areas where I can feel sensation, plus a bit of creative visualization as to whatever else my partner might also be stimulating below my level of sensation.”

Serano doesn’t expect orgasm every time, though, and that’s OK with her. “The kissing, touching and closeness are enjoyable anyway, even without orgasm,” she says. “I sometimes feel like people in wheelchairs, especially big power models like mine, don’t get touched often enough by others — not counting PCAs of course — because there’s all this hardware around us. It’s not easy to hug from a chair. So even just lying next to someone with your bodies pressed together is nice.”

If you are interested in increasing sexual pleasure, Sipski-Alexander says the future looks brighter every day. “There’s a lot more potential for women than there used to be,” she says. “If orgasm is present in 50 percent of subjects, it means it could potentially be present in 100 percent. It means that there are other issues that are causing sexual dysfunction that are potentially treatable.” Sipski-Alexander proposes a classification system to delineate all the causes of sexual dysfunction — not just the neurological reasons — that would include issues with medication, depression, partner problems and other factors. “All the principles involved in sex therapy are meaningful here. I think orgasm is a reflex,” she adds, “but I think it’s a reflex that can be augmented or inhibited by cerebral input.”

Resource
• Eros Therapy: 877/774-1442; www.eros-therapy.com

Editor’s Note, April 2011: Marca Sipski-Alexander is now medical director of inpatient acute rehabilitation services at Renown Rehabilitation in Reno, Nev.