Top 3 Takeaways from the Webinar:
- Addressing sexual health is an important part of living well with lupus. Many people with lupus experience changes in libido, vaginal comfort or emotional well-being. Recognizing these as valid health issues is the first step toward getting help and finding support.
- Intimacy goes beyond sex. It’s about staying connected, especially during flare-ups, pain or fatigue. Finding new ways to bond with your partner, such as cuddling, gentle touch, open communication, or planning time together, can help keep your relationship strong. A simple weekly check-in can also make it easier to share feelings, set expectations and stay emotionally close.
- If you’re facing challenges with sexual health or intimacy, know that you’re not alone. Many people with lupus have similar experiences, and help is available. Talk with your health care team about any changes or concerns. They can work with you to find solutions or refer you to specialists such as sex therapists, pelvic floor physical therapists, menopause experts, or women’s health providers.
Our Health Education Specialists also collected our speakers’ answers to attendees’ questions from the event:
Why is it important to talk about sexual health when living with lupus?
Sexual health is an essential part of overall health, yet it’s often overlooked in conversations about lupus. “Your sexual health is important,” Dr. Sobel said. “Sexual health is health.”
Ignoring sexual health concerns can lead to unnecessary pain, isolation and affect your mental well-being. Openly discussing your sexual concerns with your health care team or partner can help you identify solutions, whether it’s finding ways to manage side effects or ways to stay connected and confident.
Dr. Resnick added that bringing sexuality out of the shadows helps people reclaim a sense of self.
How does lupus or lupus medications affect libido?
Both lupus and the medications used to treat lupus can impact libido. Libido is a person’s desire or interest in sexual activity. Steroids may reduce the body’s testosterone levels, affecting desire and energy.
Chronic pain, fatigue and inflammation can play a role in your libido too. It’s important to remember that libido can fluctuate with disease activity, stress and medication, but, with awareness and communication, it can often be restored. Dr. Sobel shared that up to 60% of women with lupus report sexual difficulties compared to 43% of women in the general population.
There are no over the counter supplements proven to safely and effectively boost libido, especially in lupus patients. Expert speakers recommended focusing on the root causes of the low libido such as managing fatigue, improving sleep and addressing pain or dryness that may make sex uncomfortable. They also encouraged reconnecting with your body and partner in new ways such as exercising lightly to improve blood flow, scheduling time to rest before intimacy, using lubricants to reduce discomfort, and practicing open communication about what feels good or doesn’t.
Are symptoms like hot flashes, night sweats or vaginal dryness caused by lupus?
Women with lupus often experience overlapping effects from both lupus itself and hormonal changes like menopause. Lupus, certain medications (especially steroid and immunosuppressants) and early menopause can all impact hormone levels, which can affect symptoms like vaginal dryness, night sweats and hot flashes.
“Some medications, or sometimes the disease itself, also induce someone into early or premature menopause,” Dr. Sobel said. “Dryness, discomfort and changes in libido can all occur as a result of decreased hormones and blood flow, and secondary Sjogren’s can add to dryness.” Dr. Sobel also emphasized that these symptoms are treatable.
Moisturizers, lubricants or therapies can relieve dryness without increasing systemic hormone levels. For those with blood clot risks, non-hormonal options and vaginal moisturizers (such as hyaluronic acid–based products) can be effective alternatives.
How can couples maintain intimacy and connection despite pain or fatigue?
Open and honest communication is key. Try reframing your conversations and thoughts around connection rather than what you cannot do. Intimacy isn’t just about sex — it’s about emotional connection, trust and playfulness. You can rediscover intimacy through physical touch or shared laughter.
Jeanine and Ken Cox, who have faced lupus together for more than three decades, shared that open communication and humor have been their greatest tools. A strategy you can try is doing a weekly check-in, talking about what is bothering you right away and using humor can help along the way too.
How does stress or emotional health affect sex and desire?
Stress plays a powerful role in your emotional health and sexual desire. Anxiety, depression and lupus related stress can decrease your libido and increase pain sensitivity.
“When you’re living with chronic illness, stress outside the bedroom absolutely affects what happens inside it,” Dr. Resnick said. “You can’t separate emotional intimacy from physical intimacy.”
A variety of techniques, such as mindfulness, support groups, therapy, or couples therapy, may help you manage your stress.
Who can help with sexual health concerns related to lupus?
Do not hesitate to bring up your sexual health with your health care team, even if the topic feels awkward. If you’re not sure how to bring up the topic with your doctor, try saying, “Can we talk about my sexual health concerns today? If not, can you refer me to someone who can?”
Lupus & You is a free educational series where people with lupus and their family and friends can learn more about the latest in lupus research and managing the disease. You can find slides and additional resources from this Lupus & You here.
Find more information about upcoming and past Lupus & You events here.
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