Abnormal vaginal bleeding is a common but sometimes alarming symptom associated with systemic lupus erythematosus (SLE), the most common type of lupus. Some people with SLE experience lighter-than-normal menstrual bleeding, while others have an unusually heavy flow. Periods can also be irregular and unpredictable for people with this condition.

“Strange question, but has anyone had abnormal or irregular vaginal bleeding/period spotting?” asked a member of MyLupusTeam. “Just wondering if this, too, is a lupus thing.”

This article will explore the kinds of abnormal vaginal bleeding people with lupus can experience and discuss some of the causes. Understanding the reasons behind abnormal bleeding may help you feel better prepared to manage this symptom if it arises.

Kinds of Abnormal Vaginal Bleeding

Changes in periods or vaginal bleeding affect most people with SLE who menstruate. For example, a study described in the Chinese Medical Journal found that more than three-fourths of females with SLE had menstrual changes. The participants, who were between ages 15 and 49, experienced a variety of symptoms, including:

• Hypomenorrhea (light bleeding) — Nearly 49 percent
• Unusually short periods — About 23 percent
• Longer periods — Roughly 13 percent
• Amenorrhea (no regular periods) — Almost 11 percent
• Menorrhagia (heavy bleeding) — About 7 percent

Other studies have reported varying results. For example, in findings from a small study published in the journal Lupus, researchers wrote that about half of women with SLE reported heavy bleeding.

MyLupusTeam members have talked about their experiences with these issues. “My menstrual cycle has changed,” wrote one. “It’s longer and extremely painful now.”

Another member agreed: “Before I was diagnosed and my lupus activity was at an all-time high, I spotted every day.”

Others described the opposite issue. “After being diagnosed and put on meds, I went nine months without a period,” said one member.

Causes of Abnormal Vaginal Bleeding

There are many reasons you may be experiencing abnormal vaginal bleeding. You may have unusually heavy, light, or irregular periods due to lupus itself, other related conditions, or your lupus treatments. Factors beyond lupus could also affect your menstrual cycle.

Lupus and Abnormal Bleeding

Inflammation is a common feature of lupus, and it can affect brain signals that control the release of hormones responsible for menstruation. These hormone changes may increase during lupus flares and affect menstruation, or hormone changes during the menstrual cycle may cause fluctuations in lupus symptoms. Skipped periods or irregular bleeding sometimes happen during flares, when symptoms worsen.

Abnormal bleeding may also be connected to platelets — tiny cell fragments that help your blood form clots and stop bleeding. From 20 percent to 40 percent of people with SLE have thrombocytopenia (low platelet levels), which can occur when the immune system mistakenly attacks platelets. A shortage of platelets can lead to heavy menstrual bleeding.

Up to 40 percent of people with SLE will develop damage and inflammation to the kidneys, known as lupus nephritis. This condition can cause your body to produce more of the hormone prolactin, which may lead to spotting between periods. The more damaged your kidneys are, the more likely you are to experience abnormal bleeding.

Conditions Related to Lupus That May Lead To Bleeding

People with SLE are at risk of hypothyroidism (low thyroid levels), which is caused by an abnormal autoimmune response that blocks normal thyroid function. Hypothyroidism can lead to irregular periods and abnormal bleeding. Occasionally, lupus may cause hyperthyroidism (higher thyroid levels) accompanied by infrequent — or even halted — periods.

Having lupus also raises the chance of developing antiphospholipid syndrome, a condition that leads to blood clots. According to the American College of Rheumatology, some research has found that 40 percent of people with SLE have antiphospholipid antibodies — the proteins that cause the syndrome — although only a small fraction of these individuals ever develop symptoms. While the main symptom of antiphospholipid syndrome is serious blood clots, heavy periods can also occur.

Additionally, people with SLE involving multiple organ systems sometimes have hormonal imbalances, such as low levels of anti-Müllerian hormone. This hormone is involved in estrogen production and ovarian health, and low levels can lead to shortened menstrual periods. Abnormal levels of reproductive hormones like androgens, estrogen, progesterone, and prolactin often cause irregular and unpredictable menstrual cycles, as well as breakthrough bleeding between periods.

Although more research on the topic is needed, it appears that people with SLE might be more likely to develop endometriosis. Endometriosis, a condition in which the endometrium (uterine lining) forms outside of the uterus, can lead to spotting between periods, heavy bleeding, and painful periods.

Lupus Treatments That Could Cause Bleeding

Anti-inflammatory medications used to treat lupus can interfere with the menstrual cycle. For example, nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Motrin) and aspirin can make your flow lighter or cause you to skip periods. Additionally, you may miss your period or experience irregular spotting if you receive a high dose of a corticosteroid like prednisone.

If you’re taking immunosuppressive drugs, you may also experience bleeding changes. For example, methotrexate (Rheumatrex) can lead to irregular or missed periods, and cyclophosphamide (Cytoxan) can increase the risk of skipped periods or infertility. In particular, cyclophosphamide can damage your ovaries and is considered a main risk factor for amenorrhea in people with lupus.

Blood thinners that help prevent the forming of blood clots in some people with lupus can raise the risk of menstrual bleeding. Many MyLupusTeam members also reported abnormal bleeding while taking the disease-modifying antirheumatic drug (DMARD) hydroxychloroquine (Plaquenil). Although menstrual cycle changes aren’t a reported side effect of this medication, other types of bleeding problems are.

“I am on my second month of taking Plaquenil, and my second period has failed to arrive. I have taken a pregnancy test, which is negative,” reported one member.

“I just started Plaquenil a few weeks ago, and mine has come nine days early — normally, it’s 28 days on the dot,” another member commented.

Other Reasons for Abnormal Bleeding

If you’re experiencing menstrual irregularities, your lupus may not be the cause. After all, as many as 1 out of 3 women worldwide also experience abnormal uterine bleeding, according to a 2022 study in the journal Nature Reviews Endocrinology.

Bleeding issues are particularly common as menopause approaches. If you’re in your middle to late 40s, this may be the cause of abnormal bleeding. “My cycle was normal,” one member said. “However, since I’ve become premenopausal, it’s wacko.”

This symptom can also be caused by other health conditions, including:

• Polycystic ovary syndrome, which affects 4 percent to 20 percent of women of reproductive age, according to the Journal of Human Reproductive Sciences
• Uterine fibroids (tumors, which are typically not cancerous)
• Uterine polyps (fingerlike growths)
• Substantial weight gain or loss
• Use of hormonal birth control
• Blood-clotting disorders
• Infection of the uterus or cervix
• Uterine, cervical, ovarian, or vaginal cancer (a rare connection)

Some MyLupusTeam members have wondered if their bleeding was connected to their lupus but discovered that it was related to another factor. One member wrote, “It got to the point where I had my period more days of the month than days of the month where I didn’t have my period! However, according to my gynecologist, my heavy periods were due to fibroids.”

How To Manage Abnormal Vaginal Bleeding

It’s important to remember that you’re not alone — many others also experience abnormal vaginal bleeding while living with lupus. Even though this issue is common, it’s important to discuss your symptoms with your health care provider. Many people remain silent about symptoms like abnormal vaginal bleeding instead of asking for help and getting relief. It’s also important to talk to your doctor about any health changes so they can rule out the possibility of additional underlying health conditions.

Tracking your cycles and taking note of any bleeding you experience can provide you with valuable information to bring to your doctor. These details can help you and your health care team find the best approach to managing your specific symptoms. For example, if you regularly have heavy bleeding, they might want you to take iron supplements or eat more iron-rich foods to minimize your risk of iron-deficiency anemia.

If you're trying to conceive but have abnormal bleeding and are concerned about your fertility, you might want to talk with your rheumatologist and gynecologist about how to improve your chances of having a child. They can test your hormone levels and the health of your ovaries to see what challenges you might have in becoming pregnant and offer recommendations. Together, you can develop a plan to help you manage your lupus and achieve your life goals.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you experienced any kind of abnormal vaginal bleeding? Have you figured out if it’s related to your lupus or another reason? Share your experience in the comments below, or start a conversation by posting on your Activities page.