Patient Story ID: 1391624

Introduction and Objectives

Endometriosis is a whole-body disease with symptoms reaching far beyond the reproductive system. Nearly one-third of people with deeply invasive disease have ureter involvement; up to 80% have disease in the areas surrounding the ureters. Symptoms of urological endometriosis can include urgency, frequency, bladder pain, pain with a full bladder, pain emptying a bladder, burning, flank pain, and leg pain. On average people with endometriosis endure 8-10 years before being diagnosed with endometriosis and see an average of 14 doctors during that time period. Endometriosis necessitates whole-body care from multidisciplinary perspectives including urology and also research across multiple specialties.

People diagnosed with endometriosis often report that they did not know endometriosis could affect their bladder, but also report that they wish their non-gynecologic physicians could understand that endometriosis is a whole-body disease as well. This presentation will share the unique perspectives of people with endometriosis and what they want urologists to understand about the disease.

Methods

The Endometriosis Summit is a patient-run endometriosis education entity. Survey participants were recruited through an online post in an Instagram story, then were asked to fill out a questionnaire.

Results

The Endometriosis Summit’s Instagram profile is 19,000 and growing. This profile does not screen for who is following. An Instagram story was put up. People were then redirected toward a questionnaire. Questions included: Do you have pathology-confirmed endometriosis? Did you have genitourinary endometriosis confirmed by pathology? Prior to diagnosis had you sought help from a urologist? Did you have urinary/bladder symptoms prior to endometriosis surgery? If you saw a urologist prior to diagnosis, did they discuss endometriosis with you? The last question of the survey, people were asked to fill in, “What would you like urologists to understand about endometriosis?”

Conclusions

Eighty-nine people with pathological-confirmed endometriosis participated in the full questionnaire. Forty-six participants had genitourinary endometriosis confirmed at the time of surgery. Twenty-six sought help from a urologist prior to diagnosis. Of that 26, 1 patient had endometriosis mentioned by the urologist. The fill-in answers included a desire for urologists to understand that endometriosis affects the urinary system and a desire for elevated endometriosis education within the urology field.

People with the endometriosis want doctors to understand their experience and help them regardless of their specialty.