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Stories for Reprint
Lupus and Sex
By Erin Willis, MARRTC Staff
A recent study by Rush University Medical Center in Chicago found that women with Systemic Lupus Erythematosus or lupus are concerned about the impact of the disease on their sex life. "The disease not only may affect sexual health but also the emotional relationship with the partner," says Meenakshi Jolly, a rheumatologist at Rush University and the principal investigator of this study.
Sixty-seven participants with lupus between the ages of 30 and 56 answered survey questions on sexual desire, enjoyment of sex, conception, and the effects of the disease on intimate relationships. Almost half of the women reported that they avoided sex due to lupus symptoms experienced in the past four weeks. And, 36 percent said they felt a decreased sexual desire because of the disease.
Because young women are the most sexually active age group and lupus usually occurs in young women, Jolly states she is not surprised that some of her patients ask about sexual issues during clinic visits. She often hears questions like, 'Is my sex life ever going to get better? It's affecting our relationship.'
"There are so many areas of concern for women with lupus and they may not be aware of them or know how to deal with them," says Jolly. "These issues, including sexual health, need to be brought to the forefront. Maybe the patient is too shy or we, as physicians, are too focused on just treating the disease. But, we need to remain cognizant that lupus can affect other aspects of a person's life - not just the organs."
When the disease is active, patients may experience low energy, joint pains, decreased lubrication, depression or anxiety. These may affect their sexual desire or interfere with sexual pleasure. The study found more than a third of the women had lupus-related pain and decreased lubrication during sex. "There is a need to counsel about simple measures to improve sexual health like lubricants, trying alternative sexual positions or trying other strategies to gain sexual pleasure." says Jolly.
Although certain medications may affect sexual desire, living with a chronic disease may also play a role. "The disease itself can affect various aspects of sexual health like dating, body image, or through physical symptoms like pain," Jolly explains. "Whenever the disease is active or health is down, a person's desire for sex is affected," says Jolly.
More than 60 percent of the participants were concerned about preventing unplanned pregnancies. Jolly encourages women with lupus to discuss these issues, like contraceptives and what affects lupus may have on the body or on sexual health. "Rheumatologists and Internists may feel uncomfortable discussing birth control options for women with lupus due to the fear that these might worsen the disease or increase the risk of blood clots or infections," says Jolly. "Safer birth control options are limited for those with active disease or history of blood clots - usually barrier methods like condoms are used, and it requires proper use every time," says Jolly.
On the other hand, Jolly says 40 percent of the women surveyed worried about the effect medications may have on their ability to conceive. Jolly states that it takes a lot of planning between the couple and their physicians to make sure both mother and baby are healthy throughout the pregnancy.
According to Jolly the best way to deal with sexual issues is to talk with your doctor. "The only way we can do that is by improving communication between doctors and patients. This will help decrease anxiety and increase patient's confidence in coping and dealing with this disease."
Systemic lupus erythematosus, also known as lupus or SLE, is a chronic autoimmune disorder where the body's own immune system attacks healthy cells and tissues such as the skin, joints, and organs. Lupus affects nine times as many women as men. It may occur at any age, but usually appears most often in people between the ages of 18 and 50. Latinos, African Americans, and Asians are affected more often than Caucasians. For more information on SLE, visit www.lupus.org.
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