If you have systemic lupus erythematosus (SLE or lupus) and want to have a baby, it’s natural to worry that your illness may complicate that process. Most people with lupus are able to have children and do not experience any fertility issues. However, some research suggests that in a small number of people, fertility may be hampered by conditions associated with lupus. If you’re concerned about your fertility, you can take steps to protect it. If you’re among the few who do end up with fertility issues, know that infertility treatments can help.
Infertility and Lupus Disease Activity
Many different aspects of lupus activity can impair your fertility. Most of them are specific to the female or male anatomy.
Female Reproductive Anatomy
One of the more common causes of female infertility in lupus is primary ovarian failure (POF), also called primary ovarian insufficiency, which is when your ovaries stop releasing eggs and you stop having periods before the age of 40. You may miss a period here and there or stop having them altogether.
Because you can’t get pregnant if your ovaries don’t release an egg, POF can make it difficult or impossible for you to conceive. POF can start early—even during your teens—or occur any time before you reach 40, which is when female fertility typically begins to taper off. The autoimmune activity of SLE is believed to be behind many cases of POF.
Irregular menstrual cycles are also common with this disease, including going several months between periods or experiencing especially long and heavy periods.
One study showed that 53% of women with lupus who were under 40 years old had menstrual irregularities that weren’t linked to lupus medications (some of which can cause fertility issues). What’s more, no hormonal differences were found that could explain the irregularities, suggesting an autoimmune cause. Specific causes may include:
- Anti-corpus luteum antibodies: The corpus luteum develops in an ovary after an egg is released. It secretes a hormone that causes the uterus to thicken and prepare for implantation of a fertilized egg. In lupus, the immune system may attack and destroy the corpus luteum, which means the uterus doesn’t thicken and the egg may not be able to implant successfully, so the pregnancy is lost.
- Anti-oocyte antibodies: An oocyte is a cell in the ovaries that can develop into an egg. Your immune system may produce antibodies to destroy these cells.
High SLE disease activity is strongly associated with these factors, underscoring the importance of finding and sticking with effective treatments.
Male Reproductive Anatomy
Lupus can affect the male reproductive anatomy in several ways. Some studies have reported finding anti-sperm antibodies, but since these antibodies have been found in some healthy, fertile men as well, it’s likely that they contribute to infertility but aren’t solely responsible for it.
Other studies have linked some cases of lupus to significantly reduced volume in the testicles, and the volume change appears to be linked to abnormalities in the sperm that may impair its function. This may be due to SLE damaging the seminiferous tubules, which are structures inside the testicles that produce sperm.
Some men with lupus may have increased concentrations of both follicle-stimulating hormone (FSH) and luteinizing hormone (LH), which are what cause the testicles to produce testosterone. These levels may be abnormal because of lupus-related damage to the pituitary gland. High levels of both FSH and LH are linked to infertility.
Men with SLE are also 14 times more likely to have Klinefelter syndrome, meaning they have an extra X chromosome (XXY instead of XY, which is typical in males). This can cause a variety of problems, including infertility and low testosterone.
Lupus nephritis can present problems for men as well. It’s associated with erectile dysfunction and reduced production of sperm. The hormonal imbalances created by hemodialysis are linked to infertility in men just as they are in women.
What Is Lupus Nephritis?
Lupus nephritis is a condition that impacts between 40% and 70% of people with SLE, and involves kidney damage or failure.
Conditions Related to Infertility
Some conditions that are common in people with lupus may also contribute to infertility:
- Hashimoto’s thyroiditis, an autoimmune thyroid disease, triggers menstrual irregularities through endocrine (hormone) disturbance.
- Cytomegalovirus and Epstein-Barr virus infections are more common in people with lupus and have been implicated in infertility.
- Autoimmunity and immunosuppressant drugs may make people with lupus more susceptible to other common infections that can impair fertility.
- Lupus nephritis may cause infertility through dysfunction of the hypothalamic and pituitary glands. It’s treated with hemodialysis, which can cause hormonal imbalances that can lead to infertility.
Infertility and Common Lupus Drugs
A drug commonly used to treat severe lupus is the immunosuppressant Cytoxan (cyclophosphamide, or CYC). This drug is highly effective, but it can impair fertility in all sexes. It’s linked to POF, and damages oocytes and sperm production. These problems are sometimes, but not always, reversible.
In young girls with SLE, the CYC-related infertility risk is lowest in those who are given the drug before puberty. The later it’s taken and the longer it’s used, the greater the risk of impairment.
Some other standard lupus drugs may pose fertility risks for women too:
- Any immunosuppressant can lead to abnormal pap tests, which are sometimes a precursor to cervical cancer.
- Nonsteroidal anti-inflammatory drugs (NSAIDs, such as Advil or Aleve) interfere with the hormone prostaglandin and therefore may cause problems with ovulation, implantation, and formation of the placenta.
Most of these drug-related problems should go away once you stop taking the drug.
- CellCept (mycophenolate mofetil)
- mTOR inhibitors such as Rapamune (sirolimus) and Afinitor (everolimus)
Age and Infertility
In women with lupus, age may play a role in conception difficulties. Generally, people are having children later in life than they used to, with many people delaying pregnancy until their 30s. On top of that, women with SLE are advised to delay getting pregnant until their disease has been stable for at least six months.
Those two factors combined may well push a woman past her fertile years before she’s ready to have a baby, or may limit the number of children she’s able to have.
Protecting Your Fertility
Higher disease activity is linked to greater problems with infertility, so the best way to protect your ability to have children is to treat your disease. Follow your healthcare provider’s advice and report any changes in your health or the success of your treatments.
Pay attention to your reproductive health as well. Tell your healthcare provider about any changes or irregularities in your sexual function or menstrual cycle.
If your healthcare provider suggests cyclophosphamide, talk to them about the possible risk it poses to your fertility. You can also be given drugs called gonadotropin-releasing hormone (GnRH) agonists, which can protect your ovaries. These include Lupron (leuprolide acetate) and CellCept. In fact, leuprolide has been shown to reduce the risk of CYC-related POF from 30% to just 5%.
For men, testosterone supplements during CYC treatment can help prevent infertility.
Before starting treatments that could impact your reproductive health, you may want to consider harvesting and cryopreservation (freezing for later use). This can be done with sperm, eggs, or an entire ovary, which is then transplanted back into your body when you’re ready to conceive.
If you’ve tried to conceive without success for a full year and you’re under 35, your healthcare provider may diagnose you as infertile. If you’re over 35, this may happen after six months.
Once you’re diagnosed, the next step is testing to see what’s preventing you from conceiving. While looking at lupus-related issues may be a priority, it’s possible that your fertility problems have nothing to do with lupus or its treatments.
Testing for women typically includes:
- Blood work for antiphospholipid syndrome and a variety of hormones, including FSH and LH
- Ultrasound to check for visible problems with the uterus or ovaries
- Hysterosalpingogram (HSG) to see if the fallopian tubes are blocked and to evaluate the shape of the uterus
- Other specialized procedures depending on test results
For men, testing typically includes:
- Semen analysis (often all that’s required)
- Blood work to check hormone levels, including FSH, LH, and testosterone
- Ultrasound on the seminal vesicles and scrotum
- Other procedures depending on test results
The fertility treatments you receive will depend on what’s causing your infertility. Studies indicate they can be successful for people with lupus-related fertility issues. Treatment can include:
- Fertility drugs to stimulate ovulation
- Progesterone to support the luteal phase (the time between ovulation and your period)
- Treatment for any conditions that are preventing conception
- In vitro fertilization (IVF), with or without a surrogate, possibly involving donated eggs, sperm, or embryos
- GnRH agonists or antagonists, if you’re attempting IVF
- Intrauterine (artificial) insemination, in some cases of male infertility or problems with cervical mucus
- Surgical removal of sperm from the testicles for IVF in the case of very low sperm count
Coping With Infertility
When you want to have a child, finding out you’re not fertile can be a big emotional blow. Whether you’re facing treatments or coming to terms with not being able to have a baby, you may be experiencing feelings of loss, failure, guilt, anger, or shame.
These feelings are normal. It can help to reach out to family or friends for support or to find a support group for other people in situations like yours. You may find infertility groups or lupus support groups where people have gone through fertility problems, either in your area or online. Some support groups even have Zoom meetings.
You should allow yourself time to grieve, but if you need help dealing with your feelings or think you’re becoming clinically depressed, talk to your healthcare provider. You may benefit from seeing a therapist and taking antidepressants.
A Word From Get Meds Info
It wasn’t that long ago when women with lupus were counseled not to get pregnant at all. Now, protecting your fertility is often a priority when choosing treatments.
Wherever you are in your lupus treatment and infertility journey, know that your healthcare provider is an excellent resource for information and guidance. Talk to them about your priorities when it comes to having a child, now or in the future, and discuss ways to protect your fertility and catch potential problems early so you can have the family you envision.