When Adam Brown was diagnosed with lupus in 2007, he was afraid it would mean the end of his sex life. “Sex was definitely a big concern, especially since I was only 23,” he says. But Brown, now 26 and married, was relieved to find that wasn’t the case. “It was a little rough going at first, but my wife and I have worked through the problems and have a good sexual relationship.”
Sexual health can be a big concern for anyone with lupus. Some of the symptoms of lupus, such as oral or genital sores, joint pain, and fatigue can make sex uncomfortable or even painful. And the medications used to treat lupus can cause weight gain, vaginal dryness, and a decreased libido. Add to that concerns about self-esteem and body image, and it’s easy to see why lupus can have a significant effect on your sex life.
But having lupus doesn’t have to mean the end of sex. It may take some patience, creativity, and extra communication, but many people can find ways to have a satisfying sex life with lupus.
This article offers eight ways to improve your sex life when you have lupus.
1. Find Out What’s Causing Your Sexual Problem
“If lupus is affecting your sex life, figure out what’s causing the problem so you can address that particular symptom,” says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and assistant professor of medicine and behavioral medicine at Rush University.
For example, some medications for lupus can cause vaginal dryness or a lowered libido. If this is the case, your doctor may be able to change your medication or suggest a lubricant. If pain, fatigue, or depression is getting in the way of your sex life, talk with your doctor about treatments.
“If we know about the problem, we can often find ways to help,” says Jolly. But unfortunately, many people don’t mention their sexual problems to their doctor because they feel embarrassed or ashamed. “I encourage patients to talk about sexual issues, so we can try to find solutions."
2. Set the Mood for Romance and Sex
Feeling relaxed and well rested before sex can help get you in the mood and lead to a better experience for both partners. Find ways to relax and get into the mood before having sex. Or use these ideas to relax together when you want to be close but sex isn’t possible.
- Unwind in a warm bath or shower -- alone or with your partner. Warm water helps soothe achy joints and can help you feel good.
- Light candles, play soft music, or try aromatherapy.
- Read from a favorite book together.
- Turn down the lights in the bedroom and turn up the heat.
- Take turns giving one another a gentle massage.
3. Be Creative in Your Intimacy
Learn to explore different ways of being intimate with your partner. “Have fun with sex and explore new ways to be intimate in a loving, pleasurable way,” says Helen Grusd, PhD, a clinical psychologist in Los Angeles and past president of the Los Angeles County Psychological Association. “Each couple is different, so it’s important to try different things and learn together what works for you.”
If sexual intercourse is painful, focus on foreplay and touching instead. Even if you are able to have intercourse, it’s important to find other ways to be close. “Try new ways of touching and make time for the different sensations that arise,” says Grusd. “Intimate, close touch can be one of the most important ways to connect as a couple. It doesn’t even have to be sexual.”
If lubrication is a problem, try using a water-based lubricant during sex. You can also experiment with different sexual positions to find which are most comfortable. Or use pillows or other supports as needed to help take pressure off painful joints. Don’t be afraid to explore new territory and find what works best for you.
“In my case, certain positions didn’t work because they made me feel dizzy,” says Brown. “So we just experimented until we found other positions that worked better.”
4. Make Time for Sex
It may seem strange to schedule a time for sex. But when you have lupus, choosing the right time for sex can be crucial.
“You want to choose a time when you have the energy and you don’t have any other distractions,” says Jolly. “I often suggest that couples plan ahead for sex and put it in their schedule. Choose a time when you can really relax and enjoy your time together.”
Because fatigue is a common symptom for people with lupus, it may be helpful to schedule sex for the time of day when you have the most energy. Or, you may choose to take a nap before you plan to have sex. “At first, fatigue was a big symptom for me, so we had to learn to plan for sex when I still had energy,” says Brown.
5. Nurture Your Love Relationship
Find ways to connect with your partner that aren’t sexual. “It’s important to nurture all aspects of your relationship,” says Grusd. Make sure to spend time together doing things you both enjoy -- whether it’s reading, walking, watching movies, or just talking.
“My wife and I have a lot of fun together, and really enjoy each other’s company,” says Brown. “In a way, that’s more important than the sex. Being able to share a laugh together is one of the most crucial parts of our relationship. It’s what gets us through the times that are more challenging.”
6. See Yourself as a Sexual Person
Sometimes, how you feel about yourself or your body can also be a barrier to sex. “I had a hard time feeling sexy when I needed other people to do things for me,” says Brown. “That was a big hurdle for me to get over. But I learned that the issue was in my own head, and it didn’t affect how my wife saw me.”
“You may not feel attractive or sexy if you’re dealing with weight gain, hair loss, or skin rashes,” says Grusd. “But it’s important to continue to see yourself as a sexual, vibrant person.”
Trying to keep an upbeat, positive attitude can help. “Your attitude can really play a big part in how you feel about yourself,” says Grusd. Taking care of yourself by eating well, exercising, and getting enough rest can also help you feel better, both physically and mentally. A therapist or support group may also help give your self-esteem a positive boost.
7. Communicate Openly About Sex
It’s not always easy to talk about sex. But trying to be honest and open with your partner can lead to even greater intimacy. Practice telling your partner when something hurts or feels uncomfortable, and be sure to let him know when he’s doing something right. Talk with your partner about his needs too, and ask what kind of touching or caressing he might enjoy.
“You need to remember that your partner has needs too,” says Brown. “When you’re sick it can be easy to feel sorry for yourself and not consider your partner’s needs. But if you want your relationship to succeed and grow, it’s really important to talk about it and try to understand how your partner is feeling.”
8. Practice Patience With Your Body
Learn to be patient with yourself when your body doesn’t respond the way you want it to. And try to be patient with your partner. Learning to live with lupus is a new experience for you both. You may need to take things more slowly than in the past, and work on learning new ways to be intimate together.