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PATIENT PERSPECTIVES Endometriosis Affects the Bladder in Many Ways: Why Patient-Based Education Matters

By: Sallie Sarrel | Posted on: 01 May 2022

Introduction and Objectives

Many with endometriosis experience extensive urinary symptoms like frequent urination, painful urination, bladder pain, urgent urination, pelvic pain and lower back pain. It is important to understand that there are many drivers of pelvic pain in order to avoid repeat, unnecessary surgery. This abstract includes how urological-driven endometriosis affected me and why I launched a patient-based educational entity to ensure patients understand the role of urological endometriosis and its many drivers of pain. After a surgical journey with urinary tract endometriosis, understanding the role of the pelvic floor and of painful bladder syndrome and the bladder nerves finally ameliorated my pain. There is a large degree of misinformation regarding endometriosis, especially extra-pelvic endometriosis such as bladder endometriosis. Patients do not understand that their bladder pain is not coming from something that requires surgery to relieve. To educate others on the many drivers of pain in the endometriosis patient, the Endo Summit Live Webinar series was created.

Methods

Those specializing in Urogynecology, Urology, Physiatry, Gynecology and Pelvic Floor Therapy were invited to panels on various topics, including the effects of bladder endometriosis and drivers of pain such as painful bladder syndrome, pelvic floor dysfunction and myofascial pain. The webinars were aired on Facebook® and Zoom, and postproduction sits on YouTube®.

“Patients do not understand that their bladder pain is not coming from something that requires surgery to relieve.”

Results

Endo Summit Live began in 2018, airing to approximately 18 people. Endo Summit Live now airs to more than 60,000 during its 13 week season.

Conclusions

Endometriosis is a painful and debilitating condition surrounded by misinformation and driven by multiple pain generators. Many patients undergo repeat, unnecessary surgery. After my own experiences with the disease, I created a patient-based educational entity in an effort to ensure that patients are armed with the knowledge of best practices, the latest research and options for treatment paradigms so that they may best advocate for themselves. Endo Summit Live provides education on bladder-driven pain directly to the patient. Many have bladder pain, and once infection is ruled out and the bladder endometriosis has been excised, they do not know what to do about their pain. Additionally, medical gaslighting, expensive care and a limited number of practitioners who understand the true impact of the urologic system on the endometriosis patient create barriers to care. By providing experts in the field in an open forum, accessible to all, many with endometriosis are able to learn and understand the true impact of the bladder on their pain.