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Spotting between periods or other abnormal vaginal bleeding can be a common — and sometimes worrying — symptom of systemic lupus erythematosus (SLE). Some people with lupus have lighter-than-normal periods, while others experience heavier or longer bleeding. Periods may also become irregular or unpredictable.
“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 explores the kinds of abnormal vaginal bleeding people with lupus can experience and some of the causes. Understanding the reasons behind changes in your period may help you feel better prepared to manage this symptom if it comes up.
Changes in periods or vaginal bleeding are common among people with SLE who menstruate. One study published in the Chinese Medical Journal found that more than three-fourths of participants — all female and between ages 15 and 49 — with SLE experienced menstrual changes. Reported symptoms included:
Other studies have shown different results. For example, one small study published in the journal Lupus found that about half of women with SLE reported heavy bleeding.
Members of MyLupusTeam have shared similar experiences. One wrote, “My menstrual cycle has changed. It’s longer and extremely painful now.”
Another said, “Before I was diagnosed and my lupus activity was at an all-time high, I spotted every day.”
Others described the opposite problem. “After being diagnosed and put on meds, I went nine months without a period,” said one member.
There are several reasons you may be experiencing abnormal vaginal bleeding. You might have unusually heavy, light, or irregular periods due to lupus itself, other related conditions, or side effects from your lupus treatments. In some cases, other health issues unrelated to lupus could also affect your menstrual cycle.
Inflammation is a common feature of lupus and many other autoimmune diseases. Inflammation from lupus may impact your menstrual cycle. Symptoms like heavy bleeding and painful periods could be linked to inflammation.
Abnormal bleeding can also happen if you have low platelets. Platelets are tiny cell fragments that help your blood form clots and stop bleeding. Between 20 percent to 40 percent of people with SLE develop thrombocytopenia when the immune system mistakenly attacks platelets. Low platelet levels can lead to heavy menstrual bleeding.
Up to 60 percent of people with SLE develop lupus nephritis, a type of kidney disease related to lupus. Kidney disease can cause changes to menstrual bleeding. You might experience heavy bleeding or miss your period.
Spotting, heavy periods, and other menstrual changes may not be due to lupus itself but to related health conditions.
People with SLE have a higher risk of hypothyroidism (low thyroid levels). Hyperthyroidism (higher thyroid levels) is also slightly more common in people with lupus than in the general population. When thyroid hormone levels are too low or too high, it can cause irregular periods, very heavy bleeding, or no periods at all.
Having lupus also increases the risk of developing antiphospholipid syndrome (APS), a condition that causes blood clots. Many people with SLE have antiphospholipid antibodies — proteins that can lead to APS — but not every person with these antibodies develops APS.
The main concerns with APS are blood clots and pregnancy complications. However, some people may have very heavy periods, which may be related to the medications used to treat APS.
Although more study is needed, some research suggests a possible link between SLE and endometriosis. Endometriosis is a condition in which tissue similar to the endometrium (uterine lining) grows outside of the uterus. Endometriosis can cause spotting between periods, heavy bleeding, and painful cramps.
Medications used to manage lupus may also impact your menstrual cycle. You might notice heavier or lighter bleeding or even missed periods.
Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil or Motrin), are commonly used to manage lupus pain and inflammation. Taking high doses of NSAIDs regularly can interfere with your menstrual cycle. Corticosteroids like prednisone can also cause missed or irregular periods.
Immunosuppressive drugs may also cause bleeding changes. For example, methotrexate (Rheumatrex) can lead to irregular or missed periods, and cyclophosphamide (Cytoxan) can increase the risk of skipped periods or even infertility.
You may be prescribed anticoagulants (blood thinners) as part of your lupus treatment plan. For example, blood thinners are used to manage APS. These medications help prevent blood clots but can sometimes lead to heavy menstrual bleeding.
Some MyLupusTeam members have also reported abnormal bleeding while taking hydroxychloroquine (Plaquenil), a common disease-modifying antirheumatic drug (DMARD).
“I am on my second month of taking Plaquenil, and my second period has failed to arrive,” shared one member. “I have taken a pregnancy test, which was negative.”
Another member said, “I just started Plaquenil a few weeks ago, and mine has come nine days early — normally, it’s 28 days on the dot.”
Menstrual cycle changes aren’t a known side effect of this medication. It’s important to remember that timing alone doesn’t prove a cause-and-effect relationship. If you notice changes after starting a new medication, talk with your doctor to determine whether your treatment might be contributing.
If you’re spotting between periods or notice any other changes in your bleeding, lupus may not be the cause. In fact, as many as 1 in 3 women worldwide experience abnormal uterine bleeding at some point.
Bleeding issues are especially common as menopause approaches. If you’re in your 40s, hormonal shifts may be the cause of abnormal bleeding. “My cycle was normal,” one member said. “However, since I’ve become premenopausal, it’s wacko.”
Other possible causes of abnormal bleeding include:
Some MyLupusTeam members have wondered if their bleeding was connected to their lupus but later discovered another cause. One member wrote, “It got to the point where I had my period more days of the month than not! However, according to my gynecologist, my heavy periods were due to fibroids.”
You’re not alone — many people with lupus experience abnormal vaginal bleeding. Even though this issue is common, it’s important to discuss your symptoms with your healthcare provider. Many people stay silent about symptoms like spotting or unusual bleeding instead of asking for help.
Be sure to also tell your doctor about any new or changing symptoms so they can rule out other possible health conditions. Tracking your menstrual cycles and taking note of when and how much you bleed can also give your healthcare team valuable information to help guide your treatment plan.
If you have abnormal bleeding and are concerned about your fertility, talk with your rheumatologist and gynecologist about how to improve your chances of having a child. They may refer you to a fertility specialist to help you explore your options. Your healthcare team can help you manage your lupus while supporting your reproductive goals.
Lupus most often affects people of reproductive age. It is important to know that pregnancy can sometimes trigger lupus flares and may pose risks for both the parent and the baby. Some medications prescribed for lupus can also affect a developing fetus.
If your periods are irregular, talk with your doctor about safe and effective birth control options. Always talk to your doctor before starting over-the-counter birth control pills, as some of them can worsen lupus symptoms.
On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.
Do you experience spotting or other menstrual irregularities? Let others know in the comments below.
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A MyLupusTeam Member
Yes, I can attest to this too. Too make a long story short, for me irregular, severely painful periods and migraines was short of the calm of the storm for me when I was 14. As, little did I know that… read more
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