“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.