There are several types of lupus, but people often use the word “lupus” to mean systemic lupus erythematosus (SLE), the most common form of the disease. All types of lupus are autoimmune conditions that cause your body’s immune system to attack organs and tissues.
Despite the fact that lupus overwhelmingly affects women in their reproductive years, sexual and reproductive health is still one of the least studied areas in lupus research. Because lupus can attack so many body systems, your symptoms might be all over the place, from fatigue to skin rashes, to hair loss and kidney disease. These symptoms, and their treatments, can have a major impact on sexual and reproductive health.
Understanding how lupus can affect your sexual health and fertility is important in making treatment decisions and maintaining your quality of life. Here are some of the common ways lupus can affect your sexual and reproductive health.
Lupus may cause you to start puberty later
For people who are diagnosed with lupus in childhood, puberty might start later than average, though researchers aren’t sure exactly why. Some theories include:
- Nutritional deficiencies caused by the disease
- Long-term steroid treatment
- The inflammatory process of lupus itself
Lupus can also put added strain on the body, and if symptoms are more severe, this can cause children to start puberty later than their peers.
Lupus may cause menstrual problems
Lupus can cause menstrual issues like heavy bleeding, not getting a period or having irregular cycles.
This may be because lupus can attack the ovaries, which regulate your hormone levels. Lupus flares, when new symptoms appear or suddenly become worse or more disruptive, can happen because of increased estrogen levels — which occur right before you get your period.
Another cause of irregular periods with lupus might be steroid treatments or immunosuppressant medications that treat the disease. These medications can cause the ovaries to not function as they should.
Lupus can increase your risk for vaginal infection
Vaginal infections like yeast infections and bacterial vaginosis (BV) can be more common when you’re living with lupus. This is because the disease itself and the medication you take to treat it can both suppress the immune system. And infections occur more often when your body can’t fight infection effectively.
For yeast infections, an over-the-counter (OTC) fungal treatment can sometimes take care of the infection, but other times prescription treatments are needed. BV must be treated with a prescription antibiotic, so be sure to consult your healthcare provider.
Lupus can increase your risk for cervical cancer
A virus known as herpes papillomavirus (HPV) can cause cervical cancer. HPV and early cancer lesions have been found to be higher among females with lupus. This may be related to lupus itself or the immunosuppressant medication used to treat lupus. Regular routine Pap tests with your gynecologist are important for prevention.
Lupus may cause vaginal dryness
Having lupus can affect how your ovaries control estrogen levels. Lower estrogen levels can cause symptoms like vaginal dryness, irritation and pain during sex.
If you’re experiencing vaginal dryness, lubricants are one option to help make sexual activity more comfortable. Be sure to choose a lubricant that is glycerin-free and has the right PH (between 4.8 and 4.5), so it doesn’t cause a yeast infection.
Adding estrogen as a treatment option can help increase estrogen levels, which might improve symptoms. But it may not be safe in all forms of lupus. Some studies show that hormone therapy containing estrogen can cause lupus flares, worsen the disease or raise the risk of blood clots. It is important to discuss the risks versus benefits of estrogen and the safest route to take estrogen (topical, vaginal, oral) if considered safe with your rheumatologist.
Lupus may cause fertility issues
Fertility concerns can happen because of lupus itself or from its treatments.
About 3 in 10 women with lupus have antiphospholipid (aPL) antibodies. These antibodies can put you at risk for blood clots, and this can make it harder to get and stay pregnant. Lupus may also cause irregular periods, which can make it hard to determine the best time to try for pregnancy.
Cyclophosphamide, a lupus medication used for more severe forms of lupus, can also affect your fertility because it prevents your ovaries from releasing eggs every month.
You might decide to freeze your eggs for later use when your lupus is controlled and you’re on medications that are safe to take during pregnancy. Other treatments like in vitro fertilization (IVF) can help achieve pregnancy if you’re having difficulty conceiving.
Lupus may cause pregnancy complications
You can still get pregnant and have a healthy pregnancy when you’re living with lupus, but having lupus does increase your risk of pregnancy complications. Good planning can lower those risks, so it’s important to tell your rheumatologist and your OB-GYN your plans for pregnancy, so you can work together to lower your risk.
This risk of pregnancy complications with lupus is higher if you have:
- High blood pressure
- Heart, lung or kidney disease
- A history of stroke
- A history of preeclampsia in a previous pregnancy
These conditions put you at a higher risk for preeclampsia, miscarriage or delivering early.
Pregnancy is also a time when you can have lupus flares because of fluctuating hormone levels. So it is important to have regular follow-ups with your rheumatologist along with your OB-GYN during pregnancy.
Don’t shy away from asking questions about lupus
Fertility, sexual health and pregnancy are common concerns for people living with lupus.
But different symptoms affect each person in a unique way.
It can be difficult, sometimes, to figure out whether your symptoms are affecting your sexual and reproductive health, and if there’s anything you can do about it. Don’t be afraid to bring up your concerns and questions with your care team so you can get some answers.
This educational resource was created with support from Merck.
