If you’ve been living with a rheumatic or musculoskeletal disease such as rheumatoid arthritis (RA), psoriatic arthritis, osteoporosis, or Sjogren’s syndrome, you don’t need a study to tell you that chronic illness can interfere with your sex life. Vagishwari Murugesan, MBBS, FRCPC, a psoriatic arthritis clinical fellow at University of Toronto, says problems can run the gamut from the psychological/emotional (e.g., body image issues, performance anxiety, difficulty talking about sex with your partner, and a lack of understanding on their side) to the physical (vaginal dryness, erectile dysfunction, inability to orgasm, increased sensitivity to being touched, and more).
Plus, different rheumatic diseases impact patients differently, explains Kathryn Dao, MD, Associate Professor of Rheumatology at UT Southwestern Medical Center. “Lubrication issues and friction may be a bigger concern in patients with Sjogren’s syndrome or systemic sclerosis,” she says. “While mobility problems may impair a patient’s ability to engage in comfortable sexual positions, particularly for people with RA, psoriatic arthritis, ankylosing spondylitis, or other types of arthritis.”
Not surprisingly, responses to a questionnaire collecting data on pleasure, desire, arousal, and orgasm indicated that 48 percent of people with RA and 38 percent of people with PsA have some degree of sexual dysfunction, according to recent findings reported in Annals of the Rheumatic Diseases.
Eileen Davidson, 36, can relate. When she was first diagnosed with RA seven years ago, she struggled with feeling sexy, and it didn’t help that some of the meds she took zapped her libido. Pain also gets in the way: “Holding a position for too long can make my joints stiff,” says the Vancouver-based RA advocate and author, “and sex can be difficult for me at night, when I get fatigued and tend to have a lot of disease activity.”
Then, there are partner issues to contend with. “One of the reasons my last relationship was ruined is because I couldn’t have as much sex as my boyfriend wanted,” says Eileen, who’s a single mom to son Jacob, 9. “When I tried to explain sex could be challenging for me at times, he said that was okay as long has he got to have it three or four times a week.”
Unfortunately, despite the many obstacles to a satisfying sex life posed by rheumatic diseases, the topic doesn’t get much play in the exam room. “Chronic disease has a way of impacting sexual function that is often missed or simply not discussed,” notes Vaneet Sandhu, MD, a rheumatologist at Loma Linda University Health in Loma Linda, CA.
Eileen agrees: “Unfortunately, rheums aren’t asking these questions, and not every patient is comfortable bringing it up.”
Amy Pearlman, MD, Director of the Men’s Health Program and Clinical Assistant Professor of Urology at the Carver College of Medicine, University of Iowa Health Care, says “part of it is that most health care providers are not trained in how to talk about sexual health.”
Tips for Talking to Your Doctor About Sexual Problems
So where does that leave you if chronic illness–related sexual concerns are weighing on your mind and interfering with intimacy? Here are some suggestions for getting the help you need.
Schedule a specific exam — and invite your partner to come
Give your rheum a heads up that you’d like to discuss sexual problems at your upcoming exam and that your partner will accompany you. For one, your partner can help explain the history of the problem; for another, they can help remember the doctor’s instructions. Adds Dr. Pearlman, “I’m very supportive of this scenario because not only can it help the patient communicate everything to me, but it can also be important for the relationship.”
Dr. Murugesan agrees: “Bringing your partner can make it a team effort and decrease the stress.” Not ready to talk sex with your rheum? “Building trust with your provider can help, and if several visits are needed before you feel comfortable, that’s okay.”
Have a script
Dr. Pearlman recommends an opening line such as, “I have some sexual health concerns I’d like to discuss related to my condition.” Practice saying it a few times before your appointment and bring it up at the beginning of your exam so the conversation won’t be rushed. Consider alerting your doctor that you’re entering sensitive territory by prefacing your “big reveal” with something like, “You know, this is really hard for me to talk about,” or “My wife is the only one who knows this.” That will cue the doctor to slow down and give you time to express yourself.
Find a way in that feels comfortable
If you feel too embarrassed to bring up sex, you may find it more natural to talk about things like pregnancy or contraception. Although Eileen’s rheumatologist never brought up the topic of sex, Eileen broached the subject by asking about birth control. “I was advised not to get pregnant when taking my RA medications but wasn’t educated about safe sex or how to keep myself from getting pregnant or even why I shouldn’t get pregnant.”
Interestingly, Dr. Dao points out that rheumatologists themselves are being urged to ask patients what is being called “One Key Question,” and that is: “Would you like to become pregnant in the next year?” Although it’s designed to address issues like unintended pregnancies, poor birth outcomes, and disparities in maternal and infant health, Dr. Dao says, “it also opens the door to addressing sexual health in a nonjudgmental way.”
Make a list — and make sure your doctor can see it
“Writing down your concerns on a sheet of paper and bringing it to your appointment as an aid can be helpful,” says Dr. Murugesan.
It worked for Eileen: “I had my list in front of me and my rheum could see it, and she was sort of peering at it and reading it. So, if you’re scared to bring up the topic of sex, that’s a good idea to break the ice.”
Talk to the right health care provider
Eileen recommends identifying your barriers to great sex and bringing them up to the appropriate health care provider. “If you’re lacking confidence, talk to a mental health worker,” says Eileen. “Your occupational therapist can be helpful with sex positions; a physiotherapist can recommend pelvic exercises or strengthening exercises when arthritis leaves your body feeling weak; and talk to your rheum if you’re noticing that your medications are causing problems with depression or increased infections. And ask for referrals to specialists.”
Eileen has also found that nurse practitioners are great. “They will spend more time with you, and they can do referrals. Also, they’re typically female so if you have a male rheum and feel uncomfortable opening up to them, that’s an option.”
Sex still a problem? Not getting the answers you need?
Go on line and do your own research, urges Dr. Pearlman, who recommends the physician locator tool on the Sexual Medicine Society of North America’s website to find a specialist in your area. She also recommends looking up the doctors on YouTube: “Then you know that person has the personality you jibe with and the treatment options you’re looking for,” she says.
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Interview with Kathryn Dao, MD, Associate Professor of Rheumatology at UT Southwestern Medical Center.
Interview with Vagishwari Murugesan, MBBS, FRCPC, a psoriatic arthritis clinical fellow at University of Toronto.
Interview with Amy Pearlman, MD, Director of the Men’s Health Program and Clinical Assistant Professor of Urology at the Carver College of Medicine, University of Iowa Health Care.
Interview with Vaneet Sandhu, MD, an internal medicine physician who specializes in rheumatology and infectious disease at Loma Linda University Health.
Valera-Ribera, CM, et al. “OP0139 IMPACT OF CHRONIC JOINT DISEASES ON THE SEXUAL SPHERE WITH REGARDS TO A HEALTHY POPULATION: A MULTICENTER STUDY.” Annals of the Rheumatic Diseases. June 1, 2022. doi: https://doi.org/10.1136/annrheumdis-2022-eular.5263.