One of the most confusing—and frustrating—aspects of endometriosis, for both patients and clinicians, is that the amount of disease seen does not always match how someone feels. Some patients with minimal or superficial endometriosis experience severe, life-altering pain, while others with more extensive disease may have far fewer symptoms.

While still not fully understood, pain from endometriosis is not simply a matter of how much diseased or affected tissue is present. It also depends on where disease is located and how an individual’s body responds to it. Small implants near nerves, the pelvic floor muscles, or the bladder, for example, can cause significant symptoms. In addition, there are many aspects of pain processing that medicine is still in the early stages of understanding. The reality is that we do not yet fully know why symptom severity can vary so widely from person to person.

This mismatch can be especially challenging within a medical system that often relies on staging or visual findings for validation. Patients may be told their endometriosis is “early” or “not that bad,” despite experiencing severe pelvic pain, painful periods, bladder symptoms, or pain with intercourse. These experiences can feel dismissive and may contribute to delays in appropriate treatment or referral to endometriosis specialists.

At Pacific Endometriosis and Pelvic Surgery, we recognize that the “severity” of endometriosis extends beyond what can be seen on imaging or during surgery. When meeting a new patient for a consultation, we focus on the symptoms they describe and how those symptoms affect daily life, overall health, and personal goals. We hope that acknowledging how often disease stage does not correlate with symptom severity helps patients feel validated, advocate for themselves, and engage in more informed, collaborative conversations about their care.