Lupus can impact various aspects of a person’s life, and sexual intimacy is no exception. Unfortunately, this important topic is often not addressed in conversations between patients and healthcare providers. It is essential to recognize the physical, emotional, and social challenges lupus may present to sexual health. Read on to learn how to navigate these challenges and maintain a fulfilling, healthy sex life.

• Introduction
• Physical Impacts of Lupus on Sexual Health
• Emotional and Psychological Effects
• Social and Relationship Challenges
• Gender-specific Concerns
• Contraception and Pregnancy Considerations
• What Can You Do? Practical Tips for Enhancing Sexual Wellness
• In Conclusion

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Introduction

Living with a chronic illness like lupus can make sexual intimacy feel challenging, and at times, it may even seem overwhelming. In addition to the physical symptoms such as pain and fatigue, the emotional stress that often accompanies lupus can further complicate intimacy. These symptoms can also be unpredictable, making it difficult for a  partner to accommodate or even fully understand.

These struggles are unfortunately not uncommon. Research indicates that nearly 50% of women with lupus report avoiding sexual activity due to lupus flares, and over 65% of individuals with SLE experience impaired sexual function.

Furthermore, emotional concerns related to intimacy are significant for many people living with lupus. A study found that the most common fears were related to feelings of rejection, with many individuals expressing worries such as, “My partner will leave me” or “I may never find a partner or experience intimacy again.” These concerns are real and valid, and it is important to address them with care and understanding.

The road to understanding begins with awareness and knowledge. So, let’s take a look at the physical, emotional and social effects of lupus on sexual function and how to take positive steps towards a healthy sex life.

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Physical Impacts of Lupus on Sexual Health

Physical Symptoms

Pain, fatigue, and limited mobility are among the most common physical challenges faced by individuals with lupus. While these issues are often most pronounced during acute lupus flares, they can be present at any time, even when symptoms are relatively moderate or chronic.

In addition to these core concerns, overlapping conditions such as Sjögren’s disease, which is characterized by dryness, can further complicate physical barriers to intimacy, adding another layer of difficulty to sexual activity.

Medications and Hormonal Effects on Sex
The medications commonly prescribed to manage lupus symptoms, such as corticosteroids and nonsteroidal anti-inflammatory drugs (NSAIDs), can also have significant effects on sexual health:

• Corticosteroids: Prolonged use, particularly at high doses, may lower testosterone levels and disrupt other sex hormones, potentially leading to decreased libido and erectile dysfunction (ED).
• NSAIDs: These medications may increase the risk of ED and contribute to overall sexual dysfunction.

It is important to acknowledge these physical and medication-related challenges with compassion, as they can have a profound impact on an individual’s quality of life and intimate relationships.

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Emotional and Psychological Effects

While physical factors undoubtedly influence sexual health, studies have shown that emotional and psychological challenges often play an even more significant role. Emotional well-being is deeply intertwined with the sexual experiences of individuals living with lupus.

Loss of Desire or Libido

• Decreased Desire: About one-third of lupus patients report a reduction in sexual desire, which is often linked to the fatigue, pain, and hormonal changes that accompany the condition.
• Depression and Anxiety: Around 40% of individuals with lupus experience depression, which can significantly diminish interest in intimacy and make emotional connection more difficult.

Body Image and Self-Esteem

Lupus can affect a person’s physical appearance, leading to changes in weight, the development of rashes, or scarring. These changes can contribute to body image concerns and lower self-esteem. For many, this can create a barrier to feeling desirable or engaging in intimate relationships.

It is important to approach these emotional and psychological challenges with compassion, as they can deeply affect both an individual’s sense of self and their intimate connections. Addressing these issues in a supportive and understanding way is essential to fostering well-being.

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Social and Relationship Challenges

Changes in Intimate Relationships

For individuals living with SLE and other chronic illnesses, one of the added challenges is that sexual partners often also take on the role of primary caregiver. While this caregiving role is necessary for managing the disease, it can unintentionally shift the nature of the relationship. What was once a romantic and sexual dynamic may evolve into something more caregiving-focused, potentially creating emotional distance or reducing intimacy.

These challenges are very real, and studies show that, within five years of a lupus diagnosis, nearly half of married women experience divorce.

Navigating the complexities of both romantic and caregiving roles requires understanding, honesty, and compassion. It is essential to maintain open communication and create space for both partners to express their needs and emotions.

Abstinence

Due to the physical toll of lupus, including fatigue, pain, and the fear of triggering flares, many individuals with lupus may choose to abstain from sexual activity. Additionally, the need for frequent medical appointments and adjustments to treatment plans—especially early in the diagnosis—can make dating and maintaining relationships even more challenging. In some cases, it may feel easier to withdraw or give up on intimacy altogether.

It is important to acknowledge these struggles with empathy, as the emotional and physical toll can deeply impact one’s sense of connection and self-worth. Compassionate support and understanding are key in addressing the complex issues within relationships.

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Gender-Specific Concerns

Women and Lupus:

Women, who represent the majority of lupus patients, often encounter specific health challenges that impact their quality of life, including:

• Vaginal Dryness and Pain: Many women with lupus, particularly those with secondary Sjögren’s disease, experience vaginal dryness and discomfort, including dyspareunia (the term for painful intercourse). This can lead to tissue damage, which may diminish sexual desire and intimacy even more.
• Urinary Tract Infections (UTIs): Women with lupus are at a significantly higher risk for UTIs, which are among the most frequent causes of lupus-related hospitalizations. These infections can also interfere with sexual health and activity.
• Hormonal Imbalances: Hormonal fluctuations, such as higher estrogen levels and reduced testosterone and dehydroepiandrosterone (DHEA), may affect libido and energy levels.
• Mobility and Pain: Joint pain, weakness, or limited mobility in the hips and legs can reduce comfort during sexual activity.

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Men and Lupus:

Although lupus is less common in men, they often experience more severe symptoms and may require additional medications. Some specific considerations for male patients include:

• Erectile Dysfunction (ED): Over half of men with lupus experience ED, especially those with lupus nephritis or other related conditions.
• Fertility: Fortunately, lupus does not typically affect fertility in men.
• Psychological Barriers: Male patients may feel hesitant to discuss sexual health concerns, particularly with female healthcare providers. Encouraging open communication is essential for addressing these issues effectively.

For more insights into men’s experiences with lupus, watch KFL’s informative video, “Men Living with Lupus and Lupus Nephritis,” available here.

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Contraception and Pregnancy: Key Considerations for Women with Lupus

Contraceptive Options

Lupus can affect how certain contraceptives interact with your body, making personalized guidance essential:

• Oral Contraceptives: While effective for many, oral contraceptives may trigger lupus flares in some individuals.
• Non-Oral Methods: Options such as intrauterine devices (IUDs) or hormonal implants release hormones gradually, which may reduce the likelihood of flares.
  However, for women with a higher risk of clotting complications—a common concern in lupus—specific progestin-based methods may not be suitable. Always discuss these risks with your healthcare provider.

Pregnancy

Advancements in care now enable many women with lupus to have healthy pregnancies. Careful planning is crucial:

• Work with your healthcare team to ensure your lupus is well-controlled before conception.
• Review any potential risks related to medications or disease activity with your provider to promote a safe and healthy pregnancy journey.

For more in-depth guidance, explore KFL’s article on lupus and pregnancy here.

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What Can You Do? Practical Tips for Enhancing Sexual Wellness

Some First Steps

• Communication, Communication … and Communication
  Don’t hesitate to discuss sexual health concerns with your partner or healthcare provider. Honest conversations are the foundation for understanding and addressing these issues together.
• Follow Your Treatment Plan
  Consistently managing lupus flares and maintaining your overall health can help boost energy, reduce pain, and enhance your overall sense of wellbeing, including your sexual health.
• Embrace Body Positivity
  Treat yourself with kindness and compassion. Practices like mindfulness, therapy, or engaging in self-care can improve your body image and self-esteem, promoting a more positive connection with your body.
• Explore Intimacy Alternatives
  Physical intimacy doesn’t have to center on intercourse. Consider exploring other forms of closeness that feel comfortable and enjoyable for both you and your partner.
• Prepare Your Body to Be Comfortable
  • If you experience symptoms like Raynaud’s, keeping warm can make a big difference. Taking a warm bath, heating the room, or even wearing socks may help you feel more comfortable.
  • Gentle stretching or yoga before intimate moments can ease joint stiffness and prepare your muscles for movement, helping to reduce discomfort.

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How to Talk to Your Partner About Sexual Health and Intimacy

Open and honest communication about sexual health and intimacy is vital for maintaining a strong, trusting relationship. Here are some tips to guide the conversation:

• Ask Questions with Genuine Curiosity
  Show interest in your partner’s feelings, concerns, desires, or fears. Engaging in meaningful discussions can uncover hidden barriers to intimacy and help foster trust and understanding.
• Be Honest About Your Needs
  Share your concerns about physical discomfort, fatigue, or emotional struggles. Being transparent can help your partner better understand your needs and avoid potential misunderstandings.
• Collaborate on Solutions
  Explore creative ways to maintain intimacy, such as giving each other massages, cuddling, or spending quality time together in non-traditional ways.
• Focus on Enjoyment
  Approach sexual intimacy as an opportunity to celebrate your connection. Keeping the experience lighthearted and fun can help alleviate stress and create positive moments together.
• Practice Patience
  Intimacy is a journey, not a one-time event. Allow yourselves time to adjust to new expectations or plans. Recognizing that each moment of intimacy contributes to a deeper connection can help relieve pressure and create a more relaxed experience for both partners.

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How to Talk to Your Healthcare Provider

Sexual health is a vital part of overall well-being, yet it’s often overlooked during medical appointments. Studies show that only about 12% of rheumatologists with large practices routinely address this topic. Many providers lack training in this area or may prioritize other aspects of your treatment due to time constraints. If your provider doesn’t bring it up, it’s important to advocate for yourself.

• Plan Ahead
  If sexual health or dysfunction is a concern for you, include it on your list of topics to discuss when preparing for your appointment. To ensure the issue receives adequate attention, bring it up earlier in the visit rather than waiting until the end when time may be limited.
• Be Direct and Honest
  Share any challenges you’re experiencing, such as decreased libido or pain during intimacy, in a clear and honest manner. This helps your provider understand your concerns and offer appropriate guidance.
• Request Referrals When Needed
  If necessary, ask for a referral to a specialist, such as a gynecologist, urologist, or sex therapist, who has expertise in managing sexual health concerns for individuals with chronic illnesses.

Remember, advocating for your sexual health is an important step toward improving your overall quality of life.

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In Conclusion

While lupus may influence sexual health, it does not have to define it. By addressing the physical, emotional, and social challenges associated with the condition, you can take meaningful steps toward fostering fulfilling and intimate relationships.

Through open and honest communication with your partner, proactive conversations with your healthcare provider, and self-discovery, you have the power to nurture this important part of your life. Remember, sexual health is an essential aspect of overall health—never hesitate to prioritize it.

Your journey with lupus is unique, but you are not alone. With support and small, intentional steps, you can move forward with confidence and care.

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References

Campos-Guzmán, J., Barrera-Vargas, A., Gomez-Martin, D., Alcocer-Varela, J., Govea-Peláez, S., Gómez-Peláez, S., Gómez-Sánano, M., Cuevas-Ramos, D., Padilla-Ortiz, D. & Merayo-Chalico, J. (2018, October 21). Men and sexual function: An overlooked issue in systemic lupus erythematosus. Meeting Abstracts of the American College of Rheumatology. https://acrabstracts.org/abstract/men-and-sexual-function-an-overlooked-issue-in-systemic-lupus-erythematosus/

Frikha, F., Masmoudi, J., Ben Salah, R., Ghribi, M. & Bahloul, Z. (2021). Sexual function and dysfunction among patients with systemic and auto-immune diseases. Annals of Clinical and Medical Case Reports. 5(11). DOI: 10.47829/ACMCR.2021.51104.

Merayo-Chalico, J., Barrera-Vargas, A., Morales-Padilla, S., Reyna-E la Garza, R., Vazquez-Rodriguez, R., Campos-Guzmán, J., Alcocer-Varela, J., Sotomayor, M., Abud-Mendoza, C., Martinez-Martinez, M., Colunga-Pedraza, I., Uriarte-Hernández, C., Acosta-Hernández, R., Fajardo, D., Garcia-Garcia, C., Padilla-Ortiz, D. & Gomez-Martin, D. (2019). Epidemiologic profile of erectile dysfunction in patients with systemic lupus erythematosus: The Latin American landscape. The Journal of Rheumatology, 46(4), 397-404. DOI: https://doi.org/10.3899/jrheum.180292

Moghadam, Z.B., Resaei, E., Faezi, S.T., Zareian, A., Ibrahim, F. M. & Ibrahim, M.M. (2019). Prevalence of sexual dysfunction in women with systemic lupus erythematosus and it related factors. Rheumatologia, 57(1), 19-26. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6409822/

Pan, Y., Shao, Z., Deng, Y., He, L., Fang, H. & Wu, D. (2020). The impact of systemic lupus erythematosus on female sexual dysfunction in China. Internal Medicine and Care 4, 1-5. https://www.oatext.com/pdf/IMC-4-138.pdf

Sammaritano, L. & Rose, J. (2020, May 17). Living with lupus: Addressing sex and intimacy. Hospital of Special Surgery. https://www.hss.edu/playbook/living-with-lupus-addressing-sex-and-intimacy/

Sammaritano, L., Rose, J. & Kim, S. (2020, February 26). Lupus, sexuality and intimacy. Hospital of Special Surgery.  https://www.hss.edu/conditions_lupus-sexuality-intimacy-beginning-conversation.asp

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Author: Greg Dardis, MS      

Professor Dardis was formerly the Chair of the Science Department at Marylhurst University and is currently an Assistant Professor at Portland State University and the American College of Healthcare Sciences.  His focus has been human biology and physiology with an interest in  autoimmunity.  Professor Dardis is also a former President of the Board of Directors of Kaleidoscope Fighting Lupus.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.