A Happier, Healthier Sex Life with Ankylosing Spondylitisby Erin L. Boyle Health Writer
You know the symptoms of ankylosing spondylitis (AS) all too well. Pain and stiffness in your back and maybe your neck, shoulders, hips, thighs, and heels. Fatigue. Maybe you have other issues too, like compression fractures. You don’t need us to tell you—these can make physical intimacy challenging. Not to mention that pain in related joints, greater disease activity, and depression can all contribute to sexual problems in AS. So how can you take your romantic life back? We asked the experts for their advice.
AS and Intimacy 101
Let’s start with the facts: “Ankylosing spondylitis belongs to a family of inflammatory arthritis conditions,” says Magdalena Cadet, M.D., a rheumatologist at NYU Langone Health in New York. “Issues surrounding inflammatory arthritis can definitely affect intimacy.” In one study, when compared to a healthy control group, men with AS had lower scores for erectile function, orgasmic function, sexual drive, and intercourse satisfaction; women with AS had lower scores for desire and arousal.
Choose the Right Meds
“Treating AS with a biologic injection or infusion (TNF inhibitor), other disease-modifying agents, and anti-inflammatory medications, as well as physical therapy, can help improve sexual function,” Dr. Cadet says. “Proper treatment may lead to better overall physical health, flexibility, confidence, and intimacy.” Also, be sure to ask if medications might cause any sexual side effects, says Mitchell Tepper, Ph.D., M.P.H., a certified sexuality educator and sex counselor in Atlanta.
Talk It Out
When you’re in pain from AS, it can be so all-consuming, sex is the last thing on your mind. It’s key to let your significant other know—it’s not about them. “Communicating what you’re feeling is extremely important because if your partner is left to guess, their mind can go off in any direction,” Tepper says. Discuss how you’d like to approach future sexual experiences, too, such as how you might need to change position or stop midway if pain or fatigue are too intense, he says.
Intimacy Isn’t Just Intercourse
So much of our cultural understanding of sex is intercourse, but when that causes pain for someone with AS, it’s time to broaden the definition, says Lawrence A. Siegel, M.A., a certified sexuality educator in Boynton Beach, FL. What might help? Something called nondemand pleasuring, or the simple act of sensual caressing. “For a lot of people, it’s mind-blowing,” he says. “They think, ‘What do you mean, just lay here and be touched? No, I’m supposed to do something.’ It can really re-calibrate people’s thoughts and approach to sex.”
Plan for Intimacy
Scheduling sexual activities or time together can help you avoid intimacy when your AS symptoms are at their worst. “People have times of the day where they have more or less pain,” says Tepper. For instance, you might experience moderate to severe stiffness in the morning, so that isn’t the best time to have sex. “Make your partner aware that mid-day may be a better time,” agrees Dr. Cadet.
Take a Bath
If you’ve had this condition for a while, you probably know what helps your AS pain management, Tepper says, so use those tactics before getting intimate. “Consider taking a warm bath before being intimate to help relax the muscles around the spine and joints,” says Dr. Cadet. You could even incorporate a warm bath, hot shower, or massage—all good for AS pain—into your romantic interlude, Tepper says.
Figure out if you have less pain in flexion (bending forward) or extension (bending backward) positions, Tepper says, and then engage your partner with that in mind. “You can use wedge pillows for positioning and place a small blow-up pillow under your pelvic area if you need a little pelvic tilt,” he says. Companies like Liberator make wedges, sex furniture, and sex slings that can help get you into comfortable position for intercourse, he says, or try straps for disability that hold your legs or arms in place.
Get a Helper
Sex toys, especially vibrators, can be helpful tools for you and your partner, Siegel says. They introduce different ways of achieving pleasure and are useful if you’re taking meds that interfere with sex. “People with pain conditions often take antidepressants, which can make having an orgasm difficult, but a sexual aid like a vibrator can add intensity,” says Stephanie Buehler, Psy.D., a licensed psychologist and sex therapist in Orange County, CA. Other sex toys can be helpful in exploring touch and arousal.
Time It Right
AS meds are not always conducive to an awesome sex life. “Talk with your physician about timing your pain medication so that you still have both medication on board to manage your condition and energy for having sex,” Buehler says. Men may also need meds for erectile dysfunction (ED), a common problem with AS, while women may experience a reduction in lubrication (your physician can prescribe a lubricant for vaginal dryness, Dr. Cadet says).
Seek Out an Expert
Working with a sex counselor, sex educator, or physical therapist, especially one that understands chronic illness and disability, can go a long way in helping you find safe ways of building intimacy with AS. Chronic conditions like AS can alter the way couples sexually relate (and how you think or feel about yourself sexually, too). The result: “Medicalizing” or “de-sexualizing” relationships, says Buehler: “Talking about how relationship patterns have been affected can help a couple find their way back to being lovers again.”
Where to Find Help
So you’re ready for help with the intimacy aspect of your life with AS: Where do you go next? “There is no license for sex therapy, so the best way to find a competent sex therapist is through an organization such as the American Association of Sexuality Educators, Counselors, and Therapists,” Buehler says. You can ask your doctor for a referral to an expert, too, especially if you’re feeling depressed or anxious, suggests Dr. Cadet.
Use Online Resources
If you’re self-conscious about bringing the topic of sex up with your doc, reputable online resources can be helpful. Tepper offers a video series on sex and paralysis that has useful information for people with AS experiencing pain, including exploring tantric touch and solutions for ED. And the Spondylitis Association of America has support groups here you can hear experiences of others who have AS. The most important thing to know: You are not alone in this experience!
How to Talk With Your Doctor
Look, talking about sex is awkward—even when it’s with your doctor who has heard it all before. But being open about what you’re experiencing is necessary to get the help you deserve. “The way to bring it up is to be frank,” says Buehler. “Say something like, ‘There’s something personal I’d like to bring up today. It has to do with sex.’ Then let the doctor know what is happening, how often it happens, and what you’ve already tried. Your doctor may have a better idea of how to help you resolve the problem.”
Find the Fun
Last (and not least), having a sense of humor about intimacy with AS can go a long way. Add in kissing, cuddling, date nights, writing notes, giving each other small gifts, and so on, and you will develop a deeper connection that makes it possible to try new things, safely and comfortably. “Even if it doesn’t work, sometimes those are the most playful sexual moments we have,” Siegel says. “It’s important to keep the perspective that sex can still be positive—and fun.”