Women With Lupus and the Woes of Sex

Having a chronic illness can make dealing with every small everyday action—like taking a shower or dressing or buying groceries—more difficult than it is for the average person. This leaves a less-than-optimal chance for sex to be pleasurable, or even possible.

Lupus, or systemic lupus erythematosus (SLE), is a debilitating illness that can make it incredibly difficult to have sex, either because it hurts too much or it's just too tiring. The condition can affect organ systems, such as the blood, skin, heart, joints, kidneys, liver and brain. It is a type of autoimmune disease caused by the immune system attacking our body's own healthy cells.

Ninety percent of those affected with lupus are girls and women ages 15 to 45. The complications of sex for this population can be related to vaginal dryness, body image, reproduction, physical intimacy and emotional and mental health.

Unfortunately, the difficulties of sex are, more often than not, left out of conversations about lupus even though the struggle is unbelievably common—a 2019 study published in the Journal of Immunology Research indicated 85.9 percent of women with SLE had sexual dysfunction.

"Not many are, unfortunately, forthcoming to discuss their sex life," said Chethana Dharmapalaiah, M.D., a consultant rheumatologist based in India. "At least 50 percent of my patients—especially those with untreated active lupus—have problems with their sexual health."

Common difficulties

There are several reasons why sex can be physically painful or generally uncomfortable for women with lupus. It's important to understand what's going on when things don't go as planned.

Vaginal dryness

The most common problem with lupus is vaginal dryness. Thankfully, it's also the easiest symptom to treat.

Anupama Kumar, M.D., MBBS, identifies these as possible coexisting conditions, such as keratoconjunctivitis sicca (dryness of the eyes, mouth, nose and even vagina), Sjögren's syndrome or even hypothyroidism.

An accessible solution is the liberal use of lubricants during penetrative sex and the application of moisturizing creams.

Joint pains

Another common issue that can make sex painful is joint pain (arthritis). Research at Johns Hopkins Lupus Center shows that 95 percent of lupus patients suffer from joint pains at some point in their illness. This makes acrobatics in the bedroom a little hard, to say the least.

"Sex positions can be arranged so that the stress is not placed on the patient's joints, especially on the knees," Kumar said.

Pregnancy

A successful pregnancy may require extremely close medical monitoring, and contraceptive options are very limited due to the risk of causing a lupus flare-up.

"Patients are not supposed to take commonly available estrogen-containing oral contraceptive pills since they make lupus very active," Dharmapalaiah said. "Even the termination of pregnancy can cause problems like sepsis [a serious infection that can result in multi-organ failure and eventually death]."

This can make sex seem pretty scary, to the extent that some choose abstinence instead. Talk with doctors about the right contraceptives to use and getting a referral to an OB-GYN physician in particular—sometimes they also refer patients to a reproductive endocrinologist (REI)—to help with a successful pregnancy.

Medications

Lupus medications, like steroids, are a double-edged sword—they're an important part of treatment since they effectively control inflammation, but they can also cause drastic changes in the body.

"Steroids especially cause weight gain, skin pigmentation and stretch marks on the skin," Dharmapalaiah said. "This causes negative body image, which hinders sexual relationships quite a bit."

However, when lupus improves, dosages are brought down gradually and side effects subside. It's recommended that you work with a counselor to improve your self-esteem regarding body image and ways to cope, as well as how to discuss lupus with your partner(s) to enhance your sex life.

Fatigue

The Lupus Foundation of America identifies as many as 80 percent of people with lupus experience chronic fatigue—perpetual tiredness that persists even with proper rest. Kumar gives a potential workaround.

"Extreme fatigue, pain and stiffness are common in the morning and afternoon, and wane as the day progresses," Kumar said. "I tell my patients to take a mild painkiller in the evening so they can have pretty normal sex in the night."

STIs and STDs

Another cause for concern could be recurrent sexually transmitted infections (STIs), urinary tract infections (UTIs) and other illnesses. A major function of lupus medications is to suppress the immune system itself, which leads to more risk of contracting new diseases.

"Sometimes we have to investigate the partner as well for infections," Kumar said. "Moreover, cervical cancer is very common especially among older lupus patients—more than the normal population."

Talk with your doctor, but you may think about getting the HPV vaccine even though it's usually given only to younger patients.

Getting in the mood

With all of this happening inside our bodies, sex isn't always at the top of our to-do list. Just having an incurable illness can cause anxiety and depression, which can have adverse effects on desire.

"The most common problem I've come across with patients is their loss of desire," Kumar said. "Sometimes I tell people to just spend time together without actually having sex, and emotionally bridge the gap."

In order to maintain a healthy sex life, it's imperative for all people with chronic illnesses to address psychological and emotional needs without fear and shame, especially through constant communication with doctors, therapists and your partner(s).

"It's important not to hide the fact that you're in pain or having a lot of fatigue or stress," Dharmapalaiah said. "When it comes to physical ill health, there are lots of things that can be done to make symptoms better. But good mental or emotional health is possible only with a lot of communication—with your partner, your primary rheumatologist and a therapist."

Women with lupus are not doomed to have a difficult sex life, even though it requires dedicated effort, support and treatments.