Your Symptoms May Point to a Specific Endometriosis “Type”

Living with endometriosis (and possibly adenomyosis), can be accompanied by the frustrating experience of being told your symptoms “don’t match” what was seen on imaging—or even what was found at surgery. Or you may have compared notes with someone else who “has endo too,” and realized your pain patterns are completely different.

That disconnect isn’t in your head. One practical reason is that endometriosis isn’t one single thing. Many people have a mix of phenotypes (types of disease), and those combinations can line up with different symptom profiles—especially when adenomyosis is part of the picture. Recent evidence from a large surgical endometriosis population suggests some symptom patterns are more common in specific phenotype combinations, which can help you and your clinician decide what to evaluate next and what treatments are most worth trying.

What “phenotype” means in real life

Clinicians often talk about endometriosis using phenotype labels based on where and how lesions grow:

• Superficial endometriosis (SE): lesions on the surface lining of the pelvis.
• Deep infiltrating endometriosis (DIE): deeper lesions that can involve ligaments, bowel, bladder, etc.
• Adenomyosis (AM): endometrial-like tissue within the uterine muscle (not technically endometriosis, but commonly overlaps and affects symptoms).

You can have one of these or a combination (for example, SE/AM or SE/DIE/AM). This matters because symptom patterns often reflect which organs are involved and whether the uterus itself (adenomyosis) is contributing to pain.

The big symptom clue: adenomyosis often means heavier pain burden

If your day-to-day reality is frequent pelvic pain, higher-intensity pelvic pain, and sex pain—especially if symptoms feel “uterine” (cramping, heavy pressure, bulky/tender uterus feelings)—it’s worth asking whether adenomyosis has been thoroughly evaluated, even if your endometriosis diagnosis is already established.

In a large group of surgically treated patients, people with superficial endometriosis only had the lowest frequency of pelvic pain and—among those who did have pelvic pain—the lowest pelvic pain intensity. In contrast, when adenomyosis was present alongside endometriosis (such as SE/AM or SE/DIE/AM), pelvic pain was reported more often, and among symptomatic patients the pain scores were higher.

What this means for you: if you’ve tried “standard endo” approaches and your pain still feels relentless, it may not be about trying harder—it may be about treating the right driver of your pain. Adenomyosis can change the treatment conversation in meaningful ways, including which medications are more likely to help and what surgical options are realistic if you want to preserve fertility.

Sex pain (dyspareunia)

Pain with sex is physically and emotionally exhausting—and it often gets brushed off as “just endo,” or something completely unrelated. Evidence suggests dyspareunia isn’t evenly distributed across endometriosis phenotypes.

In this study, dyspareunia was less common in people with SE only and more common when adenomyosis was present (notably SE/AM). That doesn’t mean superficial disease can’t cause sex pain—plenty of people with SE have severe symptoms. But it supports a practical point: if dyspareunia is a major issue for you, it’s reasonable to push for a broader evaluation that includes the uterus (adenomyosis) and not only “looking for endo lesions.”

In real-world terms, that could change the plan from “let’s just suppress cycles” to a more tailored strategy that might include:

• optimizing hormonal suppression choices,
• pelvic floor physical therapy when muscle guarding is part of the pain pattern,
• and surgical planning that accounts for both endometriosis and uterine disease.

Bladder pain (dysuria): frequency may differ even if intensity doesn’t

If you notice burning, pain with urination, “UTI-like” symptoms with negative cultures, or flares around your cycle, you deserve a careful evaluation—because bladder symptoms can overlap with endometriosis, adenomyosis, and conditions like interstitial cystitis/painful bladder syndrome.

In this evidence, dysuria was reported more often in people with combined phenotypes—especially SE/DIE/AM—but among those who did have dysuria, the intensity didn’t clearly differ across phenotype groups. In plain language: some phenotypes may make bladder symptoms more likely to show up, but once present, the “how bad it feels” may be influenced by factors beyond phenotype (inflammation, pelvic floor dysfunction, central sensitization, coexisting bladder conditions, and more).

Practical implication: if urinary symptoms are part of your picture, it’s not enough for your care team to say “that’s not typical endo.” It can be typical for some people—especially when disease patterns overlap—and it should be taken seriously.

Bowel pain (dyschezia): deep disease is a red flag to check

Pain with bowel movements, rectal pressure, cyclical constipation/diarrhea, or sharp “knife-like” pain during a bowel movement can be life-limiting. While bowel symptoms can happen without bowel DIE, deep disease is an important possibility to evaluate.

Here, dyschezia was more common in the phenotype combination SE/DIE/AM and less common in SE only. And again, among people who had dyschezia, the intensity didn’t clearly differ by group—suggesting phenotype may influence likelihood of bowel symptoms more than it predicts exact severity.

What this means for your next appointment: if you have bowel pain (especially cyclical), it’s reasonable to ask whether your team has specifically evaluated for deep infiltrating disease and whether your imaging was done by someone experienced in endometriosis mapping (because routine ultrasound/MRI can miss or under-call DIE depending on technique and reader expertise).

How to use this information

These phenotype patterns are group-level trends, not rules. Two important “reality check” points can protect you from being dismissed:

First, symptoms don’t diagnose the phenotype. You can’t reliably “symptom-guess” whether you have SE, DIE, or adenomyosis. Imaging and/or surgery (when appropriate) still matter.

Second, lack of one symptom doesn’t rule out disease. For example, the finding that DIE was most clearly linked to more frequent dyschezia should never be twisted into “DIE isn’t painful” or “if you don’t have bowel pain, you don’t have DIE.” Pain is multifactorial, and people experience it differently.

Practical takeaways for your next steps

If your current treatment plan isn’t working—or you’re preparing for imaging, surgery, or a second opinion—use your symptom pattern to guide more specific questions.

• If pelvic pain is frequent and high-intensity: ask whether adenomyosis has been evaluated (and whether MRI or a specialized transvaginal ultrasound for adenomyosis is appropriate).
• If sex pain is prominent: ask how your clinician is assessing contributions from adenomyosis, DIE, pelvic floor muscle spasm, and vulvovaginal pain conditions—because treating only one piece often fails.
• If bladder symptoms flare cyclically: ask whether your plan includes evaluation for endometriosis involving the bladder/nearby areas and whether a parallel bladder-focused workup is needed if urine cultures are repeatedly negative.
• If bowel pain is a major feature: ask whether your imaging was performed/interpreted by an endometriosis-experienced team and whether deep disease has been specifically assessed.

Questions to ask your doctor (bring these written down)

• “Based on my symptoms, do you suspect adenomyosis in addition to endometriosis? What imaging is best in your hands?”
• “Do my bowel/bladder symptoms change what you think my disease pattern might be—and how you’d plan surgery or medical therapy?”
• “If we treat endometriosis but not adenomyosis (or vice versa), what symptoms are least likely to improve?”
• “How long should we trial this medication before deciding it isn’t working for my pain pattern?”
• “If you’re recommending surgery, will the plan address deep disease if it’s found? Do you work with colorectal/urology colleagues when needed?”

Reality check: why your results may vary

Even with useful patterns, phenotype is only one piece of the puzzle. Pain severity can be shaped by inflammation, nerve involvement, pelvic floor dysfunction, trauma history, coexisting conditions (IBS, painful bladder syndrome, migraines), and central sensitization. Also, these data come from a surgical population, which often includes people with more severe symptoms or more complex cases than the average patient—so your experience may not match the averages in this or other studies.

Still, the practical value is real: when your clinician treats endometriosis as one uniform condition, it’s easier to end up with a one-size-fits-all plan that doesn’t fit you. Using phenotype-aware thinking can help you push for the right imaging, the right referrals, and a treatment strategy that matches your actual symptom burden.