Reasons for that include lupus flare-ups, pain, fatigue, side effects from medication, and self-image issues. And that's on top of the day-to-day responsibilities that come with having a chronic illness, as well as the routine tasks of life.
But don't give up on your sex life. There are things you can do to make it more satisfying and keep that part of your relationship alive.
For many people with lupus, fatigue is the biggest roadblock to a healthy sexual relationship.
More than one-third of lupus patients have reported a decrease in desire for sexual intimacy, according to recent research conducted by Meenakshi Jolly, MD, medical adviser to the Lupus Foundation of America and director of the Rush Lupus Clinic at Rush University Medical Center in Chicago.
Nearly half of the women in Jolly's study avoided sex because of lupus-related flares and up to 40% felt that their relationships were negatively affected by their disease.
“Patients with more active disease had more decline in their sexual drive,” Jolly says.
"It's not like the desire isn't there, but the energy isn't. They want to do it, but physically, they can't bring themselves to," says social worker Jillian Rose, program manager of the Lupus Line/Charla de Lupus (Lupus Chat) programs at the Hospital for Special Surgery in New York.
Of course, many people with lupus are also dealing with the same responsibilities as people who don't have chronic condition. And that can put their sex life on the back burner.
“Most fatigued women with lupus try to figure out how they'll do everything they need to do - especially if they have children - and sex goes to the bottom of the list,” says licensed marriage and family therapist René Jones of Amherst, N.Y., who counsels many lupus patients and their partners.
Pain, Dryness, and Sensitivity
Lupus-related pain and sensitivity can be an issue in the bedroom. For instance, having sex in the missionary position gives some women with lupus hip pain. Others have vaginal dryness or very sensitive skin.
“If sex is painful from joint pain or dryness, it can feel more like a chore rather than a gift," Jones says.
If that's the case, it's time to get creative. "Redefine what sex looks like for you as a couple,” Rose says. “Some women tell me they take two Tylenol half an hour before sex, or they have intercourse in the tub or on their sides. When they're having a flare and can't stand penetration, they can do more foreplay or oral sex.”
For specific logistical problems, there are often simple fixes, Jolly says. “If it's hip pain,” she says, “different positions can help, like having the woman on top or side by side.”
Water-based lubricants can help with vaginal dryness and sensitivity.
“Some lupus patients are very sensitive; the skin rips easily, and they get very irritated,” Rose says. “Water-based lubricants help with friction and vaginal dryness, and they work with condoms.”
Being in touch with your body can help you figure out when the moment is right, says Marisa Zeppieri-Caruana of Fort Lauderdale, Fla., a lupus patient who serves on the board of the Lupus Foundation of America's Southeast chapter.
“By the late afternoon, I need a nap due to exhaustion and fever, but afterward, I usually feel my best,” she says. “I try to schedule intimacy or sex then, when I have the most energy and feel refreshed. If actual sex isn't in the cards due to a flare-up, sometimes my husband and I take a bubble bath. Massages can also be very intimate, and they've helped soothe my muscle and joint pain.”
Extra foreplay works wonders for many lupus patients.
“In general, women need foreplay in order to lubricate, so with lupus they may need a bit more,” Jones says. “I also recommend masturbation. Having an orgasm may reduce stress, pain, and fatigue, and it reminds women that sex can be fun and pleasurable.”
Drug Side Effects
Steroids can cause unwanted weight gain. Antidepressants can sometimes reduce your libido. Other medications may cause different problems, including vaginal dryness or a tendency toward yeast infections.
If troublesome side effects are affecting your ability to become intimate, tell your doctor at your next appointment.
“Reviewing your medication list with your physician or a pharmacist may help,” Jolly says. “They can print out a list of possible side effects, and in some cases, trying a different medication could be an answer.”
Some women with lupus may feel reluctant to have sex because they're unhappy with their birth control options, since it's commonly believed that all lupus patients should avoid birth control pills. But that may not be not necessary for every woman with lupus.
“A lot of lupus patients and doctors feel that birth control pills can't be used by lupus patients, but it's a subset of patients who have had blood clots,” Jolly says. “Talk to your doctor and ask if birth control pills with low estrogen or without estrogen are OK. Some patients get progesterone injections every three months. There are also IUDs that people can use.”
Some people with lupus develop a negative self-image because of disease-related weight gain or rashes, which make them feel less attractive.
“I have an extremely negative body image because I gained 70 pounds due to prednisone use for lupus, but my husband tells me he loves me just as I am and finds me sexy,” says Laurie Cook of Jamaica, N.Y. “We make love three or four times a week, and although I'm in pain a lot, we're careful to keep our physical love alive and recognize the importance of this fine part of life.”
Telling your partner how lupus has changed your self-image may help. Sometimes, it may be as simple as speaking up for your own needs.
Many lupus patients, for example, need ample sleep to function properly, but getting enough rest can interfere with quality time or intimate moments together.
“Finding a man who lives a similar lifestyle and who accepts you and your lupus is the best way to have a happy relationship,” says lupus patient Gia Ricci of New York. “The happiest relationship I had was with a man who happened to need a lot of sleep and who respected my needs.”
Men With Lupus
Lupus is more common in women than in men. But men with lupus can experience many of the same sexual setbacks as women with lupus.
"Male lupus patients may also experience fatigue, pain in general, and pain in joints with sex, all of which may be associated with decreased libido," Jolly says.
In addition, "some blood pressure medications may have an effect on erections in male lupus patients," Jolly says.
"Some lupus medications can affect libido and cause erectile dysfunction; however, the major issues are pain and fatigue. They often find sex more of a task and feel very uncomfortable discussing this with their partners," Rose says.
"For men with lupus, there's a tremendous amount of shame around issues of sex and intimacy... the discomfort of admitting challenges in an area that they are traditionally expected to dominate," Rose says. "I usually coach them [about] opening the lines of communication with their partners and helping them to find strategies to cope more effectively, like having sex at times of day when their pain is lowest, trying different positions to reduce pain, and different ways of being intimate other than intercourse, such as cuddling, massages, oral sex, and various body stimulations that they may derive a sense of pleasure from."
Jolly recommends that men with lupus learn about their disease, and medication side effects. "They should be encouraged to discuss their sexual health with their doctors, so they can be counseled and referred for appropriate care," Jolly says.
Talk About It
Does it seem like your partner is reluctant to initiate sex out of fear of hurting you? Are you reluctant to have intercourse because it's painful? If lupus has changed the way you interact in the bedroom, it's important to talk to your partner as soon as possible.
“The first thing I recommend is a conversation over dinner or a glass of wine, not in the bedroom,” Rose says. “Don't wait until the resentment builds up; talk about the changes now. If you haven't had sex in months because it's painful, problem-solve to come up with things other than penetration to overcome the anxiety you feel about sex.”
Tell your doctor, too, if lupus is curbing your sex life.
“People with lupus can have a normal life, but you may have to bring it up with your doctor,” Jolly says. “We only get 20 minutes to see a patient, and physicians don't think of sexual problems as routine; we think of blood pressure and obvious symptoms. But there are several things that can be done to improve sexual health, so don't be embarrassed to ask for help.”
Meeting with a therapist - either alone or with your partner - may also help.
“A therapist should help the couple understand each other and work as a team,” Jones says. “There should be a discussion about what each person is losing because of the lupus and how they can comfort each other and rewrite their lives together. Maybe the way they make love changes. Maybe there's more foreplay or masturbation. But making the decision together can be a bonding experience that should help them feel closer and want to share that closeness physically.”