In honor of Endometriosis Awareness Month, surgeons, practitioners, and patients invaded Celebration, Florida, for the fifth annual The Endometriosis Summit (Figure 1).

Endometriosis is a chronic and debilitating condition affecting nearly 200 million worldwide. The average person with the disease can seek help for 8-10 years prior to receiving diagnosis. While symptoms can include painful periods and miscarriage, endometriosis is not solely a gynecological disorder. Many with the disease report bloating, urinary urgency, urinary frequency, chronic urinary tract infection (UTI)–like pain, flank pain, stomach issues, lower back pain, and leg pain. As part of its mission to drive endometriosis forward, The Endometriosis Summit designs programming to educate multiple specialties on the intricacies of the disease beyond gynecology and on the multiple drivers of pain.

Dr Yaniv Larish, a urologist from New York, Dr Maurice Chung, a urogynecologist from West Virginia, Dr Michael Watters, a urologist from Texas, and Dr Tracy Sher, a physical therapist from Florida were faculty for Bladder Hour, a panel discussing bladder and bladder-driven pain.

During the didactics section, Dr Larish discussed urological evaluation for endometriosis. Dr Larish is part of a multidisciplinary surgical center for endometriosis (Figure 2). His team consisting of a urologist, a gynecologist, and a general surgeon is designed to tackle the nuances of endometriosis from every angle. “The majority of endometriosis patients will have involvement far beyond their reproductive system. It takes a multispecialty approach to fully eradicate the disease and give patients back the life they deserve. Endometriosis is a disease treated by surgery that requires skilled specialty surgeons capable of treating the disease wherever it is in the body.”

Dr Larish’s lecture stressed the importance of motivational interviewing during intake. Understanding when a person’s bladder hurts can tip off the urologist as to what is going on with the patient. “Urologists will see endometriosis patients. If you see a patient under 50 complaining of bladder pain, endometriosis should be part of the differential. We should normalize asking when the bladder hurts because pain with a full bladder that is not relieved by emptying or where that full bladder triggers a full-blown flare could be endometriosis.”

Dr Maurice Chung, the founder of the evil twins of pelvic pain, also spoke. Dr Chung is known for his work with overactive bladder and endometriosis. Ongoing pain post complete excision of endometriosis can often be traced back to the sensory driver of the pelvis—the bladder. Dr Chung, who has created a pelvic pain center in West Virginia, teaches that all that ails the person with endometriosis may not actually be endometriosis. At The Endometriosis Summit, he presented research on the connection to the bladder through sacral nerves S2, S3, and S4 that amps up pain in the person with endometriosis. He also described a protocol for treating postexcision of endometriosis pain that involved bladder instillations and nerve blocks. According to Dr Chung’s research, if a person has had a complete excision of the disease and is still experiencing pain, it is imperative to consider the nerves including the pudendal and ilioinguinal nerves and the bladder as drivers of pain.

In a unique presentation, Dr Michael Waters discussed bladder pathogens. Oftentimes people have UTI symptoms or have recurrent UTIs but the urine culture is negative. Using DNA diagnostic testing to sequence the urine sample may reveal microbes that are generating the infection and pain. Dr Waters spearheaded a fascinating discussion on bladder microbes in patients who have pets and the importance of asking about lifestyle and living arrangements in the person with chronic bladder pain.

Rounding out the panel was Dr Tracy Sher, a pelvic physical therapist. In addition to her practice, Sher Pelvic, Dr Sher owns thepelvicguru.com and is founder of the Global Pelvic Health Alliance Membership network, which is an international directory and educational entity for all working in pelvic pain. Dr Sher discussed the role of the pelvic floor in bladder pain and also the importance of manual therapy to the bladder and the fascia (Figure 3).

Dr Larish rounded out the bladder session with a hands-on simulation lab demonstrating techniques to treat overactive bladder.

The Endometriosis Summit, founded by Dr Andrea Vidali, a gynecologist, and Dr Sallie Sarrel, a pelvic physical therapist and person with endometriosis, is unique in its endometriosis education. In addition to training surgeons, physical therapists, and practitioners, The Endometriosis Summit believes that if change is to happen in endometriosis it is going to be patient-driven. People with endometriosis are often thrust into a position to advocate for themselves due to the lack of access to skilled endometriosis care and the myths and misconceptions about the disease that are all too common. The Endometriosis Summit opens its doors to patients and caregivers to help educate and arm people with the knowledge they need and create a dialogue between those working in endometriosis and those living with endometriosis. Sessions at The Endometriosis Summit are open to patients and most sessions, either virtual or in-person, have open mics in order to facilitate discussion about the disease. In addition to the bladder panel, other highlights of the conference included a keynote by Representative Jillian Gilchrest about her work to advance endometriosis care and education in the state of Connecticut and a discussion on body literacy and menstruation by Dr Chris Bobel, a sociologist. There was a breakout session on heart rate variability and sleep’s role in chronic pain by Dr Susan Clinton. Dr Lila Abbate greeted the crowd with a discussion about how the foot can play into pelvic pain and Laura Fletcher, of Selah Fertility, headed a miscarriage support room.

Given Dr Sarrel’s background in physical therapy, another goal of The Endometriosis Summit is to take a deep dive into all the generators of pain someone with endometriosis might experience and to hold space to explore not only how to change endometriosis for the next generation but how to live well with the disease.

The Endometriosis Summit 2024: Hear Us Roar will take place March 8-10, 2024, during Endometriosis Awareness Month and feature a preconference course of didactics and labs for urologists. For more information, please email info@theendometriosissummit.com or follow @endometriosissummit on Instagram, Facebook, Tic Tok, or Youtube.