Rheumatic Disease and Heavy Periods: Could Adenomyosis Be Missed?

When you’re already managing one chronic illness, period problems can feel “secondary”

If you live with a rheumatic disease (like rheumatoid arthritis, lupus, Sjögren’s, scleroderma, vasculitis, or related inflammatory conditions), you’re already juggling fatigue, pain, flares, medications, and appointments. So when your periods become brutally painful or unusually heavy, it’s common to wonder: Is this just part of chronic inflammation? Is it my meds? Is this “normal for me”?

Here’s the key: heavy bleeding and severe cramps aren’t just annoyances—they can be clues. Recent evidence suggests adenomyosis may be significantly more common in people with rheumatic diseases than many clinicians assume. That matters because adenomyosis is very treatable, and getting the right diagnosis can change your options.

This post is here to help you connect the dots and walk into your next appointment with a clear plan.

What adenomyosis is (in practical terms)

Adenomyosis happens when tissue similar to the uterine lining grows into the muscle wall of the uterus. In real life, that can translate into:

• • Heavy menstrual bleeding (flooding, clots, soaking through products, anemia)
  • Severe cramps that don’t respond well to typical painkillers
  • Pelvic pressure or a “boggy” tender uterus (not always)
  • Pain with sex for some people
  • Fertility challenges for some (not everyone)

Not everyone with adenomyosis has obvious symptoms, and not every person with heavy bleeding has adenomyosis. But a very specific pattern—heavy bleeding plus severe dysmenorrhea—is a big red flag.

If you have a rheumatic disease, adenomyosis may be more likely than you’ve been told

In a cross-disciplinary clinic population, adenomyosis showed up in about 41% of women with rheumatic diseases versus about 20% of age-matched controls—roughly double the odds (OR ~2.8). Even when accounting for factors that can influence adenomyosis risk (age, BMI, whether someone had given birth, prior C-section, and current hormonal therapy), having a rheumatic disease still tracked with higher adenomyosis rates.

What this means for you: if you have a rheumatic disease and you’re dealing with heavy bleeding and/or severe cramps, it’s reasonable to ask, “Have we actually evaluated me for adenomyosis?”

This isn’t about blaming your symptoms on your uterus when your rheumatic disease is real. It’s about not missing a second treatable condition that can pile onto pain, fatigue, anemia, and quality-of-life loss.

The symptom combo that should prompt an adenomyosis work-up

People with rheumatic diseases in this clinical population reported higher rates of:

• • Abnormal uterine bleeding (around 40% vs 26%)
  • Heavy menstrual bleeding (around 43% vs 26%)
  • Severe dysmenorrhea (severe period pain)

And importantly, adenomyosis was strongly linked with having both heavy bleeding and severe cramps together (odds about 5.75 times higher with that combination).

If you’re living the “two-fer” experience—bleeding heavily and being taken out by cramps—there’s a solid argument for a targeted evaluation instead of just cycling through iron pills and stronger pain meds.

“Isn’t this just fibroids?” Not necessarily—especially in rheumatic disease

Fibroids are a common explanation offered for heavy bleeding and pelvic symptoms. But in this clinical comparison, fibroid prevalence was essentially the same in rheumatic-disease patients and controls (about 21% in both groups). That doesn’t mean you can’t have fibroids—it means fibroids may not explain why menstrual symptoms seem disproportionately common in rheumatic disease.

Practical takeaway: if you’ve been told “it’s probably fibroids” (or nothing was found), but your symptoms persist—ask specifically whether adenomyosis was assessed on imaging and whether your ultrasound report used standardized descriptors.

How adenomyosis is usually diagnosed (and how to avoid a “normal ultrasound” dead end)

Many patients get told their ultrasound is “normal,” even when they’re clearly not okay. One reason: adenomyosis requires the sonographer and clinician to look for specific features and describe them clearly.

A common first-line test is transvaginal ultrasound, ideally performed by someone experienced with adenomyosis and using consensus terminology (often called MUSA features). In the clinical approach used here, adenomyosis was diagnosed when at least one “direct” ultrasound feature was seen.

What you can do with this information:

• • If your prior imaging was a quick scan focused mainly on ovaries or fibroids, you may not have had a true adenomyosis evaluation.
  • You can ask for ultrasound (or MRI, in some cases) that explicitly addresses adenomyosis features and includes standardized reporting.

Why this matters extra in rheumatic disease: bleeding, anemia, pain, and medication complications

Heavy bleeding can lead to iron deficiency and anemia, which can worsen fatigue, shortness of breath, brain fog, and exercise tolerance—symptoms that already overlap with rheumatic disease. Severe cramps can drive frequent NSAID use, which may be complicated by GI risk, kidney issues, anticoagulation, or other meds you may be on.

Getting the right gynecologic diagnosis can help you and your care team:

• • Reduce bleeding (and potentially reduce anemia-related fatigue)
  • Reduce pain days and missed work/school
  • Choose safer pain strategies if NSAIDs aren’t ideal for you
  • Coordinate hormonal treatments with clot risk, migraine history, blood pressure, and autoimmune medication plans

Treatment options you can discuss (and what “success” can realistically look like)

Adenomyosis treatment is individualized, especially when you also have a rheumatic disease. In general, options include:

Hormonal suppression can reduce bleeding and pain for many people by quieting the uterine lining and reducing inflammatory cycling. Common options include progestin-based treatments (including an LNG-IUD) or other hormonal approaches. Non-hormonal options (like tranexamic acid for heavy bleeding) may help bleeding days, while pain plans may include NSAIDs when safe and other pain strategies when NSAIDs aren’t.

If symptoms are severe and you’re done with childbearing, hysterectomy is the definitive treatment for adenomyosis—but it’s a big decision, and rheumatic disease (and medications like steroids or immunosuppressants) may affect surgical planning and recovery.

What “working” often means in real life: fewer flooding days, improved hemoglobin/ferritin, fewer ER-level pain episodes, and more predictable cycles—not necessarily “perfect periods.”

Practical takeaways for your next appointment

Bring your symptoms and ask directly for a plan. Here are focused questions that can move things forward:

• • “Given my heavy bleeding and severe cramps, can we evaluate for adenomyosis specifically?”
  • “Can my ultrasound report be reviewed for adenomyosis features (MUSA terms), not just fibroids and ovarian cysts?”
  • “Would a repeat ultrasound with an adenomyosis-experienced sonographer—or an MRI—change management in my case?”
  • “How should we manage my bleeding to prevent or treat iron deficiency? Can we check ferritin, not just hemoglobin?”
  • “Which treatment options fit best with my rheumatic disease and medications (NSAIDs safety, clot risk, blood pressure, migraines, bone health)?”

A reality check: what this evidence can and can’t tell you

This type of clinic-based evidence is very useful for flagging what might be underdiagnosed, but it doesn’t prove that rheumatic disease causes adenomyosis. It also may not apply perfectly if you’re younger (the women assessed here were over 30) or if you also have suspected endometriosis (endometriosis was excluded in this clinical comparison, even though many people have both conditions in real life).

Your symptoms still deserve full evaluation even if you don’t “fit” a study population. The bottom line is simpler than the science: if you have a rheumatic disease and your periods are heavy and/or severely painful, you deserve a targeted gynecologic work-up—not reassurance and endurance.