Endometriosis Stage and Pain: Why 'Mild' Can Still Hurt

If you’ve been told your endometriosis is “only stage I” but your pain stops you in your tracks, the research is on your side.

What stage measures

Endometriosis found at surgery is scored from stage I to IV by how much disease the surgeon sees and where. It describes the disease, not how much it hurts.

Stage didn’t predict pain

At a university hospital endometriosis center, researchers scored pain in 244 women with surgically diagnosed endometriosis: 88 at stage I or II and 156 at stage III or IV.¹

• Stage alone didn’t match how often or how badly women had period pain or pelvic pain between periods.¹
• Pain during sex was, if anything, slightly less severe at higher scores.¹
• Location mattered: women with disease in the vagina had about 2.5 times the odds of deep pain during sex.¹ Women with disease only on the ovaries had less pain during sex and less frequent period pain.¹

Location and type of pain

A 2002 study² of 225 women with deep endometriosis found that different sites went with different pain:²

Where the disease was	More likely pain2
Ligaments behind the uterus	Pain during sex
Bowel	Pelvic pain on non-period days
Vagina	Painful bowel movements during periods
Bladder	Urinary symptoms

Stage didn’t explain how long women waited for a diagnosis either.³ See why endometriosis takes years to diagnose.

What this means for you

1. Your pain is evidence. UK guidance lists period pain that affects daily life, pain during sex, painful bowel movements and urinary symptoms during periods as reasons to suspect endometriosis.⁴
2. Keep a pain diary. Guidance says it helps the conversation.⁴
3. After surgery or a detailed scan, ask where the disease was found, not just the stage. Location can explain pain a number can’t.

For the basics, see what endometriosis is and imaging versus laparoscopy.

Try: “My report says stage I, but my period pain is an 8 out of 10 and I have pain with sex and on the toilet. Where exactly was the disease, and what treatment fits my symptoms rather than the stage?”

Period, Handled covers this in Chapter 8, “When Pain Is a Message,” in a section called “Stage Isn’t Suffering.” Its Period Scorecard records your pain score and what it stopped each cycle, so your own measurement sits in the room next to the stage. See the book.