Lupus and Infertility - Kaleidoscope Fighting Lupus (2022)

Both women and men with lupus dreaming of starting a family may struggle with infertility. However, with today’s medical technologies, infertility can be treatable and even preventable!

  • Introduction to Lupus and Infertility
  • Who is at greatest risk, and what are the risk factors for infertility in lupus?
  • How can emotional health influence fertility?
  • How is infertility prevented and treated?
  • In Conclusion


Introduction to Lupus and Infertility

Of the 9% of those affected by infertility worldwide, about 1% also have SLE. Unfortunately, the medications used to treat lupus, such as cyclophosphamide, and overlap diseases like antiphospholipid syndrome, can negatively impact the ability to conceive. Mental health issues like depression and fatigue can also create a roadblock to pregnancy. Neither women nor men with lupus are immune to the emotional devastation that dealing with infertility can bring.

However, infertility in lupus can be a temporary and reversible condition. Advances in medicine have made pregnancy possible for many, including those with lupus. Knowing how lupus can impact fertility will help those eager to become pregnant plan early to achieve the best possible outcome. Pregnancy may not happen overnight, and expectations may have to shift slightly, but it may still be possible.

Lupus and Infertility - Kaleidoscope Fighting Lupus (1)


Who is at greatest risk, and what are the risk factors for infertility in lupus?

Caucasian women with SLE are at high risk of infertility, especially those who put off pregnancy until their 30s, when many first receive their lupus diagnosis and receive treatments that may impair fertility. This is also the time all women start producing fewer eggs and may develop conditions like endometriosis and uterine fibroids – conditions that can make it difficult to conceive. Younger, African American women with SLE can also experience episodes of infertility lasting up to a year when not trying to become pregnant. However, when actively attempting to conceive, it typically does not take longer for them to become pregnant than women without lupus.

Men with lupus are also at high risk for infertility, especially post-pubescent boys. Many men with lupus who are in their 30’s and sexually active may also experience infertility, often when ready to start a family with a partner.

Two of the more common risks for infertility in both women and men with lupus include:

Antiphospholipid Syndrome (APS): Overlapping APS may cause blood clots to form in the vessels, which drain reproductive organs, resulting in organ damage and infertility. For women, APS may cause premature ovarian failure. For men, APS can cause erectile dysfunction. Studies show that about 50% of men with APS have moderate to severe erectile dysfunction. Some also have low sperm counts, and poor sperm quality. The risk of infertility is even greater for both men and women who take cyclophosphamide.

Cyclophosphamide: For women, cyclophosphamide therapy can cause menstrual cycle irregularities (amenorrhea), and or in some cases, premature ovarian failure. For men, cyclophosphamide can decrease sperm levels, though usually this is temporary. However, infertility is often reversible for both women and men once treatment with cyclophosphamide decreases or stops. All the more reason to carefully plan for pregnancy!

There are several other conditions in both men and women with lupus that may be to blame, including:

  • Cervical/vaginal inflammation and infections: Scientists suspect that since those with lupus are more vulnerable to infection, they may also be at greater risk for contracting sexually transmitted diseases like chlamydia, which can cause infertility.
  • Lupus nephritis (LN): Men with LN may experience erectile dysfunction and reduced sperm count. Women with LN may experience menstrual irregularity leading to infertility.
  • Testicular damage: SLE may damage the seminiferous tubules, the part of the testicles responsible for producing sperm, affecting the number and quality of sperm.
  • Follicle-stimulating hormone (FSH): High FSH levels may impair a woman’s ovarian reserve or egg supply. Men experiencing infertility often have high levels of FSH and luteinizing hormone.
  • Anti-Mullerian hormone (AMH): Normal to high AMH levels are present in women of childbearing years who are fertile. However, some women who struggle with infertility have low levels of AMH, particularly African-American women with lupus.
  • Prolactin and Gonadotropin-releasing hormone (GnRH): GnRH is needed to produce FSH and luteinizing hormone, both crucial to fertility. Women on dialysis with renal failure may have low GnRH levels.

Lupus and Infertility - Kaleidoscope Fighting Lupus (2)


How can emotional health influence fertility?

Emotional wellbeing can significantly impact pregnancy. Sometimes, it is just impatience and “trying too hard” that make getting pregnant difficult. However, for others, including those with lupus, deeper emotional issues can be responsible, including:

Anxiety and Depression: All the stress of having a chronic disease like lupus on top of being anxious about pregnancy can make it harder to conceive.

Fatigue: Unrelenting fatigue can deplete the physical and emotional energy needed to conceive, and trying to conceive may worsen fatigue. It is a vicious circle.

Interpersonal Relationships: The stress of coping with autoimmune disease on top of trying to become pregnant can strain relationships. One partner may want to give up or may start blaming the other when pregnancy seems impossible. It is obviously harder to become pregnant when at odds with each other.

Loss of Libido: The medications used to treat anxiety and depression, such as selective serotonin reuptake inhibitors, can also diminish the sex drive for both women and men with lupus – as can the factors mentioned above. As a result, the lack of desire can make pregnancy difficult even though it is the ultimate goal.


How is infertility prevented and treated?

In many cases, infertility is preventable. Anyone eager to become pregnant should speak with a healthcare practitioner right away about their desire to start or add to a family. For example, doses of cyclophosphamide may be lowered or stopped altogether to preserve fertility – other drug options may also be available. Managing other lupus symptoms and health conditions to achieve low disease activity can improve physical and emotional health to achieve fertility – it just takes a lot of patience and strict adherence to treatment plans.

There are several methods for treating infertility, including:

Assisted Reproductive Technologies

Embryo cryopreservation – freezing eggs – and in vitro fertilization (IVF) can be effective ways to achieve pregnancy. Women with lupus undergoing IVF should be closely monitored for ovarian hyperstimulation syndrome, which could lead to blood clots and lupus flares. IVF can also be risky for women with poorly managed antiphospholipid syndrome, hypertension, or renal disease.

Testosterone Therapy

Studies have shown that testosterone therapy given to men taking cyclophosphamide can preserve fertility by maintaining healthy sperm and sperm counts.

Mental Health Therapy

Talking openly with a mental healthcare practitioner can help develop coping and stress-relieving skills and improve communication between loved ones. Remaining as stress-free as possible can go a long way in improving physical health – it is the mind-body connection!

Lupus and Infertility - Kaleidoscope Fighting Lupus (3)


In Conclusion

There are several reasons that both women and men with lupus may struggle with infertility. However, it is usually preventable and treatable. Proper planning, patience, and taking care of the mind and the body can help make the dream of pregnancy a reality for many!

References

Angley, M., Spencer, J., Lim, S., & Howards, P. (2020). Anti-Mullerian hormone in African-American women with systemic lupus erythematosus. Lupus Science & Medicine, 7. E000439. http://dx.doi.org/10.1136/lupus-2020-000439

Clowse, M., Chakravarty, E., Costenbader, K., Chambers, C., & Michaud, K. (2012). Effects of infertility, pregnancy loss, and patient concerns on family size of women with rheumatoid arthritis and systemic lupus erythematosus. Arthritis Care & Research, 64(5). 668-674. https://doi.org/10.1002/acr.21593

Gallinaro, A., Silva C., Rabelo Jr., C., Caleiro, M., & de Carvalho, J. (2012). Moderate/severe erectile dysfunction in patients with antiphospholipid syndrome. Lupus, 21(3), 319-323. https://doi.org/10.1177/0961203311427552

Hickman, R. & Gordon, C. (2011). Causes and management of infertility in systemic lupus erythematosus. Rheumatology, 50(9), 1551-1558. https://doi.org/10.1093/rheumatology/ker105

Houlihan, B. (26, April 2019). How does lupus affect fertility? eIVF.org. https://www.eivf.org/post/https-www-eivf-org-post-how-does-lupus-affect-fertility

Rabelo Jr., C., Bonfa, E., Carvalho, J., Cocuzza, M., Saito, O., Abdo, C., & Silva, C. (2013). Penile alterations with severe sperm abnormalities in antiphospholipid syndrome associated with systemic lupus erythematosus. Clinical Rheumatology, 32, 109-113. https://doi.org/10.1007/s10067-012-2083-4

Somers, E. & Marder, W. (2017). Infertility 0 prevention and management. Rheumatology Disease Clinics of North America, 4(2), 275-285. https://dx.doi.org/10.1016%2Fj.rdc.2016.12.007

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon.She loves to read and write and especially loves to educate through her writing. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

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 [emailprotected] 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.

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