Living with lupus can impact your sex life with unique, symptom-related challenges. The good news is you can still have safe and enjoyable sex. It just takes a little communication, planning, and taking care of your mental and physical health. Here’s what you need to know.
How Does Lupus Affect Sex and Intimacy?
The condition itself, as well as any medications you take, can lead to physical and mental challenges in the bedroom. Some issues you may have are:
- Joint and muscle pain
- Limited hip and knee movement
- Fatigue
- Erectile dysfunction
- Vaginal dryness
- Yeast infection
- Genital sores
Other physical effects include:
- Mouth sores
- Weight gain or loss
- Loss of appetite
- Rash
- Hair loss
Mental health effects of lupus include:
- Loss of desire and interest in sex
- Depression
- Anxiety
- Body image issues
- Lower self-esteem
How Can I Have Better Sex and Intimacy With Lupus?
Communicating with your partner is key. But before you do that, ask yourself these questions to better understand your views on sex, such as:
- Is sex a comfortable topic for you to discuss?
- Growing up, how did your family or culture view sex and intimacy?
- How did your parents express affection toward each other?
- Did you receive sex education?
- What fears and hang-ups do you have about sex?
- What is your outlook on sex?
Once that’s done, set aside some time to talk to your partner in a neutral setting. That means when you’re both relaxed and in a good emotional space, not just when problems pop up. Then you can start to zero in on how lupus may be affecting your relationship.
Consider areas of miscommunication. For instance, you may think your partner isn’t attracted to you anymore. But they’re avoiding sex because they’re afraid of causing you more physical pain. Remember to use “I” statements instead of “you” when talking about your fears and desires. For example, “I enjoy when we hug” instead of “You never touch me anymore.”
Plan ahead
Preparing for sex doesn’t sound very romantic, but it’ll help you and your partner feel more comfortable. It also gives you something to look forward to. Here are some ideas:
- Book a hotel room in your own city or travel somewhere new for a long weekend.
- Call a babysitter to watch your kids.
- Rest before sex to help build up your energy reserves.
- If your doctor says it’s OK, take pain medicine 1 hour before.
- Ease sore muscles with a warm bath or shower.
- Do Kegel exercises to boost blood flow to your genital area to help with arousal.
- Use a water-based lubricant if you have vaginal dryness.
Practical steps
As you and your partner start to become intimate, keep these tips in mind:
- Before sex, spend at least 30 minutes on foreplay.
- Use an over-the-counter or prescription water-based lubricant for vaginal dryness.
- Try different positions to figure out what’s most comfortable for you.
- Place pillows under sore joints.
- Try other kinds of touching like holding hands, massage, kissing, cuddling, caressing, oral sex, and masturbation.
How Do I Talk to My Doctor About Sex and Intimacy With Lupus?
It can be hard to bring up sex and intimacy with your doctor. They’re often not routine topics during a doctor’s visit. But if you have concerns or questions, about sex, it’s important to bring them up. Describe your specific symptoms and how they impact your sexual health. Your doctor can help figure out the cause. They may need to change your medicine to help with pain and tiredness. Or they might suggest physical therapy for better range of motion.
Mental Health and Emotions
When it comes to sex and intimacy, your mental and emotional wellness is just as important as your physical health. Think about keeping a journal to jot down changes in mood and any physical symptoms. Keep note of when you have the most energy. That may be the best time for sex.
Counseling -- on your own or with your partner -- can help you process feelings surrounding sex and living with lupus. Your family doctor, rheumatologist, and gynecologist are also sources of support.
Share your feelings with someone you trust, like your partner, a family member, or a friend.
Online or in-person support groups for people with lupus can offer encouragement, advice, and a listening ear from those who understand what you’re dealing with.
How Does Lupus Impact Birth Control?
Some lupus medicines can cause birth defects. And your risk for other health problems is higher if you get pregnant during a flare.
Using birth control can help stop an unplanned pregnancy, but some forms are better than others for people with lupus. These include:
- Condom
- Diaphragm
- Sponge
- Cervical cap
- Spermicide
- Withdrawal
- Having your tubes tied (tubal ligation)
- Vasectomy
- Implant
- IUD
- Progestin-only hormonal birth control
Hormonal birth control with both estrogen and progestin could trigger problems in people with active lupus or those who tend to get blood clots. Talk to your doctor first to figure out which form of birth control is safest for you.
How Does Lupus Impact Fertility?
Some lupus treatments, as well as the illness itself, can affect your ability to have a baby. The lupus medicine cyclophosphamide (Cytoxan) may cause premature ovarian insufficiency (POI). That means your ovaries often don’t function the way they’re supposed to before age 40. But with fertility treatments, it’s still possible for you to get pregnant.
If you’re planning to get pregnant, talk to your doctor 3 to 6 months beforehand to learn more about having a healthy pregnancy with lupus.
Menopause
Once you’ve reached the age where you can no longer get pregnant or have had at least 12 months of no periods and it’s permanent (in other words, menopause), you may start to have symptoms of hot flashes and body aches. This can feel a lot like lupus symptoms. Lupus also sometimes triggers early menopause. Or you may find that menopause improves your lupus symptoms.
Stay in tune with what’s happening with your body and share any changes with your doctor. If you take hormone replacement therapy (HRT) for menopause symptoms, remember that you have a higher chance of blood clots with lupus.
How Does Lupus Impact Sexual Health?
Here are some other things to consider concerning lupus and your sexual health:
HPV vaccine. Women with lupus have a higher chance of getting cervical cancer because their bodies have trouble fighting off an HPV infection. The HPV vaccine protects you from cervical cancer. You usually get two doses at age 11 or 12. But if you missed the vaccine series, ask your doctor if you should still get it.
Pap smear. Compared to women without lupus, women with lupus are more likely to have abnormal Pap smears. This test checks for cancerous cells in your cervix. Be sure to get a Pap smear every year to check for early signs of cancer.
Yeast infections. Lupus medicines such as steroids can curb your immune system, leaving you more open to yeast infections. These are easily treated with over-the-counter or prescription drugs.
