If you are living with ankylosing spondylitis, you may have found that the fatigue, pain, and stiffness associated with the condition are affecting your sex life. Maybe your symptoms have made formerly enjoyable positions or activities awkward or uncomfortable, or perhaps you feel too tired to even want to have sex.
Although sexual dysfunction with AS isn't a foregone conclusion, a number of studies have shown a high incidence of sexual dysfunction among both men and women with ankylosing spondylitis.
A meta-analysis published in February 2015 in the Journal of Rheumatology, for example, found that men with ankylosing spondylitis had lower scores on every aspect of sexual function included in the International Index of Erectile Function (IIEF). The IIEF patient questionnaire asks about the quality and quantity of erections over the previous four weeks, as well as about sexual desire and enjoyment.
Similarly, a study published in November 2015 in the International Journal of Rheumatic Diseases found that men with ankylosing spondylitis had a higher incidence of erectile dysfunction than men who didn’t have AS. Erectile dysfunction in this population was associated with anxiety, depression, having had AS for a longer time, older age, and a high level of functional limitations, as measured by the Bath AS Functional Index (BASFI).
A study of sexual function in women with ankylosing spondylitis, published in the March 2016 issue of Archives of Rheumatology, found that sexual dysfunction was more common among women with AS than in the general population. Sexual function scores were significantly lower in the women who had high depression scores.
With all this evidence of the dampening effects of AS on sexual function, is there any reason to hope that sexual expression and enjoyment can remain a part of your life?
Rather Than Give Up, Look for New Possibilities
“If sexuality was an important part of life before your diagnosis, you should continue to find ways to enjoy sex,” says Mitchell Tepper, PhD, MPH, a nationally recognized expert on sex therapy for people with disabilities and their partners — and himself a person with incomplete quadriplegia.
There are both physical and emotional reasons to try to find ways to enjoy sex, he points out. Physically, sex brings pleasure and helps you feel more in command of your body. Emotionally and psychologically, the fear that your physical state is preventing you from being a fully capable person can be depressing and isolating.
“When your body doesn’t function like you’re used to, you see yourself as less of a partner,” Dr. Tepper says.
Finding ways to have sex and give your partner pleasure improves your self-confidence and provides intimacy and connection with your partner. The goal is to be able to say, “I can please my partner and be valuable in a relationship,” Tepper says.
Qualified sex therapists like Tepper are knowledgeable about the positions, toys, and props that can help you continue to enjoy sex. Either partner can contact a sex therapist for advice, says Tepper, and a sex therapist should be able to talk with your doctor, physical therapist, or other members of your medical team as needed to understand your condition and medications and assess the options for improving your sex life.
Rethink Intimacy, and Talk to Your Partner
Tepper believes that a starting point is to change your perspective on sex, intimacy, and AS and let go of preconceived notions, such the belief that sex should always be spontaneous.
“Sex as spontaneous is something of a fantasy,” Tepper says. Another notion worth reconsidering is the belief that good sex is limited to mutually satisfying intercourse. There’s a wide variety of options for giving and receiving pleasure, Tepper says. There will be times when you're not feeling aroused but can still enjoy touching, massaging, and giving pleasure to your partner through oral sex or by using sex toys. Likewise, there may be times when your partner just wants to please you in these ways.
The next step is to have an honest, open talk with your partner, one in which you share your desires as well as any limitations you’re feeling. Let your partner know how your diagnosis is affecting you right now. Focus on what you would each like to do to stay sexually active — in other words, approach this as collaborative, creative problem-solving.
If your partner is distressed by your diagnosis or by talking about new sexual positions and techniques, realize that he or she may need some time to adjust to necessary changes. It may help for your partner to speak privately about his or her concerns with a sex therapist or marriage and family therapist in a confidential setting.
Explore Your Options for Sexual Intimacy
You and your partner have the opportunity to look at the challenges AS poses as a way to creatively explore sex. Here are some strategies to help you rekindle sexual enjoyment in your relationship.
Treat ankylosing spondylitis. First of all, you’ll feel best if your ankylosing spondylitis is well-managed. Medications can reduce pain and stiffness. Talk with your doctor if you aren’t feeling as good as you think you could.
Touch and connect. Pain, disability, and challenges to your sense of self and your sense of value can all result in feeling disconnected from your partner. Tepper advocates intimate touch — holding, caressing, and bonding in a position that is comfortable for you both without necessarily aiming toward intercourse or orgasm.
Identify your best time of day. “All of us have times when we have the most energy,” says Tepper. If you wake up with unsexy stiffness, morning sex might not be an option. Share this information with your partner so that he or she isn’t guessing about when the time is right.
Stay active. In general, says Tepper, being physically active keeps your whole body as ready for sex as it can be. Light exercise could even be a good warm-up before sex.
Try standing or kneeling. Experiment with a variety of positions for sexual contact. For example, a person with lower back pain might feel more comfortable if they are standing or kneeling rather than lying flat. One option for intercourse is for one partner to stand at the edge of the bed and the other to use cushions to raise their pelvic area to the appropriate height.
Try sitting. Another option is for the person with ankylosing spondylitis to sit in a chair with firm, comfortable lower back support. Hold your partner on your lap, either facing you or facing away.
Use cushions. There are a number of foam bolsters designed specifically to help people be more comfortable during sex (check out Liberator for some cushioning options). Other options include inflatable pillows or cushions that allow you to control the pressure, bean bag chairs (“if you can get out of them,” Tepper says), and regular bed pillows, ranging from body pillows to small pillow rolls that can provide the right amount of support for sore joints.
Consider specially designed furniture. Items such as swings and special chairs, such as the Intimate Rider, not only support one or both of you but also assist with thrusting. A sex therapist can help you decide whether this kind of investment is right for you.
Use lubrication. Vaginal dryness increases as women age; lubricants can help ease this challenge to lovemaking.
Create a sensual mood. “I am a big believer in atmosphere,” says Tepper. Music, candles, scented or essential oils, and videos you both enjoy can help make sex play more fun.
Take a soak. A hot tub or bathtub for two may be another location for sex. “The warm water could be soothing for some people,” Tepper says.
Play with toys. Vibrators can help both partners enjoy sex. There are many styles available — and shopping for them together may be sexually exciting in itself.
Do some research. Tepper’s website includes a number of short videos that demonstrate positions for people with disabilities. He also recommends the book The Ultimate Guide to Sex and Disability as a resource.
You have many options for keeping intimacy alive with AS. It may require changing your routine or even your definition of sex, but both you and your partner can enjoy new and rewarding sexual experiences.
Additional reporting by Ingrid Strauch.