“How’s your sex life?” That’s a question rheumatologists should be asking their rheumatoid arthritis (RA) patients regularly.
More than half of all RA patients have difficulties with sex, says Alex Shteynshlyuger, MD, a New York City urologist. Yet sex doesn’t always get the attention from rheumatologists that it deserves.
The problem is not simply pain. Myriad issues interfere with patients’ ability to enjoy sex: fatigue; mechanics; drugs that dampen the libido, suppress the secretion of natural lubrication or interfere with fetus development; self-esteem issues that arise from the ravages of chronic disease; depression and more.
Moreover, “It’s not like this is a problem you actually solve,” says Mariah Z. Leach of Louisville, Colo. Leach writes a personal blog on her life with RA. She married and bore a child after she was diagnosed with RA, and a second child is on the way as of this writing. “[The ability to enjoy intimacy] goes up and down based on how you are doing.”
Rheumatologists can do much to help their patients, and when they can’t help them directly, they can refer them to other providers with different expertise, such as physical or sex therapists.
“With adjustments, a sexual relationship can be healing—for both the body and the mind,” says Diana Wiley, PhD, a Seattle-based sex therapist.
Barry R. Komisaruk, distinguished professor, department of psychology, and adjunct professor, radiology, Rutgers University, Newark, N.J., has conducted studies, which showed that arthritic and other forms of pain in women are mitigated by vaginal and cervical self-stimulation, with no reduction in sense of touch. Nonsexual self-stimulation boosted pain thresholds by 50%; pleasurable self-stimulation by 75% and (self-induced) orgasm did so by more than 100%. Komisaruk is now conducting brain-imaging studies to track the neural pathways of genital stimulation leading to orgasm and pain blockage.
The first problem rheumatologists face in helping patients with issues of sexuality is that “Patients will not even bring up the fact that they have urinary incontinence, let alone sexual issues,” says Maureen K. Watkins, DPT, an assistant clinical professor, department of physical therapy, at Northeastern University, Boston.
Sometimes, rheumatologists forget to ask about sex, says Julie S. Schwartzman-Morris, associate professor of medicine, department of medicine, rheumatology, North Shore University Hospital, Hofstra School of Medicine, Manhasset, N.Y. “In addition to asking the typical sex questions—about sexually transmitted infections and complications—I have to remind myself and my trainees to ask about problems in sexuality.”
Pain and reduced libido are perhaps the biggest obstacles to a good sex life, says Mary Lynn, DO, assistant professor of obstetrics and gynecology at Loyola University Medical Center, Maywood, Ill., and libido takes a major hit from fatigue. “If your hip feels like there’s a knife in it or your fatigue makes it difficult even to walk, there’s not a whole lot you can do to make sex more appealing,” Leach wrote on a website for rheumatology patients.
RA can diminish self-esteem, further interfering with sex life, says Schwartzman-Morris. Appearance issues, such as weight gain, “puffing up” and acne, are especially difficult for younger patients, she says. “They may not be willing to show their body to a regular partner, or to new people.” They may also be too embarrassed to address these issues with their doctor, she says.
The late George E. Ehrlich, a former president of the ACR, was quoted in a chapter on arthritis in a book about sexuality: “The person who has arthritis often feels insecure and sometimes misinterprets concern on the part of the partner as distaste. … Or a spouse may avoid sexual overtures for fear of hurting the arthritic partner; this may be perceived by the patient as a sign of revulsion.”
Ehrlich went on to advise patients to “be kind, and be specific. Let your partner know what feels good and what hurts.”1
Not surprisingly, RA can lead to depression, which can exacerbate sexual dysfunction, says Shteynshlyuger.
Some obstacles to a good sex life are purely physical and treatable, but sometimes subject to misdiagnosis. For women with Sjögren’s disease, vaginal dryness can accompany dry eyes and mouth, says Schwartzman-Morris. Depending on the patient’s age, they may assume the cause of dryness is menopause or disuse of sex organs. But they may simply need treatment for this form of RA, she says.
Alternatively, they may simply need lubricants, says Schwartzman-Morris. Shteynshlyuger notes that estrogen creams work particularly well on dryness.
Helping a woman approach pregnancy can be particularly complex, says Schwartzman-Morris. “A lot of the medications we use are not safe during pregnancy,” she says. In fact, a woman has to stop taking certain medications several months before attempting conception.
Nonetheless, “when the disease is well controlled, patients should be able to conceive normally and have a normal pregnancy.”
Certain medications can interfere with sex drive. “Corticosteroids can change the testosterone-to-estrogen ratios, which can negatively affect libido and sexual function,” says Shteynshlyuger. “Endocrine management, including management of hypogonadism/low testosterone, may be indicated.” Contrary to popular belief, the female libido is vulnerable to low testosterone.
Some antidepressants are also known to reduce sex drive. It’s important to ask patients if any medications might be interfering with their intimacy, because depression is frequent among RA patients, says Watkins.
Men with RA are more likely than those without to suffer from erectile dysfunction, says Shteynshlyuger. Oral PDE-5 inhibitors, such as Viagra and Cialis, work well in this population, he says.
Second-line treatments, such as self-injection with alprostadil or Trimix, and vacuum erection devices “tend not to work, due to limitations with manual dexterity,” Shteynshlyuger says. “Inflatable penile prosthesis, while ideal for most men, require fine dexterity skills, and may not work well in [men with rheumatoid conditions]. In these men, semi-rigid penile prosthesis, which requires minimal and only coarse dexterity, offers an effective and satisfactory treatment option.”
Advice for Patients
In her quest to improve her own sex life, Leach writes, “I forced myself to read more than 50 articles about sex and RA!” (italics hers). These were mostly popular articles she found by Google search, from such websites as WebMD and HealthCentral, as well as websites directed toward life with arthritis, such as Arthritis Today and the ACR. “The vast majority of the articles” provided a mostly grim view of RA patients’ prospects for sex, she says, but she culled the small percentage of the information that addressed what patients can actually do to improve their sex lives, first for herself, and then in a detailed blog post on a website for rheumatology patients. The experts interviewed by The Rheumatologist independently made many of the same points. The highlights should provide guidance to rheumatologists for addressing sexual issues:
Sex is not just intercourse. Sex offers plenty of pleasurable activities for those for whom intercourse is difficult or unappealing, including “fantasizing together … visual stimulation, … hugging, cuddling, kissing, sensual massage, oral contact … and fondling,” Leach writes. She advises readers to “be creative in finding other ways to improve your emotional and physical connection with your partner.”
Lynn notes that even among couples for whom intercourse is often successful, finding the right position “may be a work in progress,” because change is a constant for patients.
Work on your relationship. Leach stresses the need for “open and honest communication,” noting, “It may be easier to invite dialogue with your partner if you begin sentences with ‘I’ rather than ‘you.’ For example, ‘I feel loved when you hold me close’ is probably better than ‘you never touch me anymore,’” she writes.
Lynn advises rheumatologists to encourage trust and open conversations between patients and their partners.
Incorporate RA into your relationship. A partner who understands “how RA works and the pain it causes you is more likely to be understanding and accommodating,” Leach writes. Additionally, it can help to think of sex life issues as “our problem,” she says, noting that it’s often easier said than done.
“The partner may fear hurting the [RA patient], and that may affect their view of intimacy,” says Lynn. “That’s a relationship issue the partners need to work on together.”
Prepare for sex. “Talk to your doctor about medications that may impact your sex life. Ask about pain medications or muscle relaxants that may assist with improving your sex life,” Leach writes. Consider gentle stretches to boost range of motion, pain relievers or muscle-relaxing medications, and/or a warm bath or shower in the hour before sex.
Watkins says, “Unfortunately, RA patients have to plan for being intimate, whether it is timing medications, taking a bath beforehand [or having their partner give them a massage.]”
Timing of sex. “Plan ahead for sex, and arrange your day so you won’t be overly tired from other activities,” writes Leach. Lynn suggests timing sex according to when the patient has the best combination of low pain and high(er) energy.
Leach also advises being open to experimenting creatively and imaginatively. “Try to laugh together if something you try doesn’t work,” and make use of sexual aids, from vibrators to over-the-counter lubrication, to pillows or other furniture for support.
“Patients should do regular aerobic exercise to lubricate their joints,” says Schwartzman-Morris.
Initiating the Conversation
All of this, of course, is a sketch of the sort of advice that rheumatologists can provide their patients. But first, you need to invite the dialogue.
That can begin in the waiting room, says Northeastern University’s Watkins, who recommends strategic placement of a handout on sex and RA from the ACR. She also says the Rheumatoid Arthritis Quality of Life Questionnaire, which the patient can fill out in the waiting room, has several questions on whether or not the patient likes to be touched. Gently questioning the patient about any negative answers, particularly whether the questions apply to being intimate with a significant other, is a natural way to get the conversation going, she says.
“Try to be open with your patients,” says Lynn. “Have a nonjudgmental way of talking to them.”
It’s also possible to dive right into the topic. A question to start with is, “Is there any medication you are taking that you find affects intimacy and sexual relations?” says Watkins. “Sometimes in the clinic, time is of the essence, and just bringing the topic up helps the patient feel supported,” she says.
If your hip feels like there’s a knife in it or your fatigue makes it difficult even to walk, there’s not a whole lot you can do to make sex more appealing.
Or one can take a more delicate approach with single patients, by asking them whether they worry that their condition will affect their ability to find a partner or to have children, says Schwartzman-Morris.
Lynn suggests asking if the patient is sexually active, and if not, whether it has anything to do with the RA. If it does, she suggests asking whether this change has occurred since diagnosis and whether relationship issues have arisen as a result.
If the patient is having problems with sexuality, Schwartzman-Morris advises determining first whether the problem is physical or psychological. It is important to bear in mind that some physical issues, such as skin problems, may have psychological sequelae, she says.
Referring Patients to Other Providers
The distinction between physical and psychological problems is important when determining who to refer the patient to, should a referral be necessary. Both physical therapists and therapists who address patients’ emotional and psychological states can be critical to a rheumatology patient’s sexual well-being.
Quality-of-life scores are good indicators of the need for physical therapy. Particularly if the patient lacks strength or range of motion, “we can help them achieve a better sex life,” says Watkins. “We can improve range of motion, especially in the large joints, hips and knees, so that patients can move easier and maintain sexual positions more easily.”
She says physical therapists can also help patients find ways to work around fatigue.
“Encourage your patients to maintain, if not improve, current levels of function, through endurance exercises, strength training and stretching,” says Sarah Smith, a physical therapist in Loyola University Medical Center’s acute inpatient rehabilitation unit. “If you see a decline in any of those areas, therapy services would be beneficial to help enhance all aspects of your patients’ lives.”
Physical therapists can also teach patients to know their limits and to work within them, which is particularly difficult because the limits are always changing, says Smith. “We help them find their limits, and know where to push them and where to back off.”
All this is critical “to maintaining the function you have,” says Smith. “If you don’t use it, you lose it—whether it’s functional endurance or range of motion.”
Lynn recommends that rheumatologists identify local sex therapists to whom they can refer patients, noting that her institution has a sex wellness clinic with a six-week program for helping patients with arthritis and other conditions. Leach emphasizes the need for sex therapists who deal with disabilities and expresses her frustration that a sex therapist she found in her area wasn’t taking new patients.
As for when to make referrals, Nortin M. Hadler, MD, MACP, MACR, FACOEM, a professor of medicine and microbiology/immunology, and attending rheumatologist, University of North Carolina Hospitals, says he refers patients “when the patient and I feel pretty certain that [the patient’s problem] is beyond us.” Knowing that, he says, is helped by knowing the patient well.
As with other aspects of chronic disease, sex lives need to be managed by rheumatology patients with the help of their doctors and other providers. But there is no reason why patients should have to do without physical intimacy.
David C. Holzman writes on medicine, science, environment and energy from Lexington, Mass.