In Sixteen Years of Endometriosis

Today Amy speaks with Dr Maurice Chung about:

-the study he co-authored called “A Pain Desensitization Algorithm for Phenotyping and Treating Chronic Pelvic Pain”

-the details of this algorithm for trying to establish a patient’s pain generators to reduce pain

-nerve blocks for pelvic pain and the role of the bladder in pelvic pain.

Who is Dr Maurice Chung?

Dr. Chung received his medical training from Tufts University School of Medicine, Boston, and post- graduate OB/GYN residency training at Albany Medical Center, N.Y. He is Board Certified in General OB/GYN and Sub Specialty Board certified in FPMRS and received the Advanced Laparoendoscopic Surgeon certification from the Accreditation Council of Gynecologic Endoscopy (A.C.G.E.). He is the Director of the Center for Endometriosis, Pelvic Pain & Urogynecology of WVU Medicine Wheeling & Reynolds Memorial Hospital, He is the former Director of the Mercy Center of Endometriosis, Pelvic Pain & Urogynecology, Cleveland Clinic Mercy Hospital, Canton Ohio and also the former Director of Center of endometriosis, Pelvic Pain and Bladder Control, Lima, Ohio.

His focused interests and research in the last 30 years have been in advanced Laparoendoscopic surgery, minimally invasive surgery, Urogynecology, treatment of chronic pelvic pain, Pelvic Floor Dysfunction, pudendal nerve dysfunction, Endometriosis and Interstitial cystitis. He performed and taught the first urinary continence TVT procedure in China, 2000.

Clickable links at insixteenyears.com/episode133

A Pain Desensitization Algorithm for Phenotyping and Treating Chronic Pelvic Pain

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Amy speaks with Lyssette Horne about:

-their experience with ovarian torsion, skin, and breast cancer.

-some of the tools and practices Lyssette used to cope during these difficult times.

-the ways endometriosis and cancer has changed their body, and how they are learning to find acceptance with them.

In Part 2, Lyssette shares about their experience with endometriosis and the obstacles in finding care.

Lyssette Horne (she/they) is a black, queer, and chronically ill artist, activist, and documentary filmmaker.

Lyssette is a fierce advocate for mental health and suicide prevention, harm reduction, and body positivity. She has spoken on panels on the way trauma manifests in BIPOC LGBTQ homeless youth and led workshops for the DOE to help identify and support homeless youth in schools. Inspired by the works of Audre Lorde, Lyssette created Black Queer Roar, an online diary documenting their experiences as a chronically ill cancer and trauma survivor.

Their activism has led to many creative endeavors. Lyssette co-produced the Emmy-nominated documentary ‘Invisible: Diary of New York’s Homeless Youth’, which featured their own story. They were named one of the Advocate magazine’s ‘Top Forty Under 40’, and their story was featured in Gay City News, Daily News and CNN.

Lyssette roars to break the silence, fight stigma, and give their community permission to show up authentically.

CONNECT WITH LYSSETTE:Instagram: @BlackQueerRoar

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WEBSITE AND RESOURCES: insixteenyears.com

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Listen to 2 chapters from Amy’s audiobook. In this episode:

-Amy briefly shares what her book “Finding Peace with a Devastating Disease” is about.

-Amy shares about the challenges of producing her audiobook as a chronically ill and dynamically disabled person.

-Listen to chapter 2 “It’s Like Being Upset the Sky is Blue” and the prologue “Is Endometriosis a Devastating Disease?”

Amy’s book is available as a paperbook, e-book, and audiobook. See where to find it here: https://insixteenyears.com/where-to-find-my-book/

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Amy speaks with Dr Wendaline VanBuren about:

—the 2024 publication called The Society of Radiologists in Ultrasound Consensus on Routine Pelvic Ultrasound for Endometriosis that Dr. VanBuren was a senior author on.

—the goal of the consensus, who participated, and the vision for implementation in the future.

— the difference between a Routine Pelvic ultrasound, Augmented Pelvic ultrasound, and Advanced endometriosis imaging.

Who is Dr. Wendaline VanBuren?

Dr. VanBuren is a board-certified radiologist, Associate Professor and Chair of the Gynecological imaging section at the Mayo Clinic in Rochester, MN, USA, with a dedicated interest in Endometriosis. Dr. VanBuren is the senior author on the Society of Radiologists in Ultrasound Consensus on Routine Pelvic US for Endometriosis, the Course Director for the 1st International Endometriosis Imaging Congress and one of the founding Course Directors for the Mayo Clinic Gynecological and Breast Imaging course.

On a national level, she co-founded the Disease Focused Panel on Endometriosis for the Society of Abdominal Radiology and was the invited guest editor for the journal Abdominal Radiology Special Edition on Endometriosis. Her ongoing work has been highlighted at a variety of national and international radiology, gynecology and pelvic pain conferences.

Clickable links at insixteenyears.com/episode130

Read the consensus here.

Instagram and X: @wendalinevb and @endoeice

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WEBSITE AND RESOURCES: insixteenyears.com

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Amy speaks with Yesenia Villalta about:

-the stories we tell commonly tell ourselves about our bodies and endometriosis-tips for processing the anger we often feel toward this disease-the importance of getting curious about the shame we feel and how to move toward self-acceptance and love.

Who is Yesenia Villalta?

Yesenia Villalta is a bilingual and bicultural social worker licensed in Virginia and Maryland, USA. She is the founder and owner of Venceremos®, LLC, a holistic healing practice primarily serving Black, Indigenous, and People of Color (BIPOC) to overcome trauma-related stress and has served as an expert witness in qualified immigration hearings. She is trained in various modalities that support the whole person and has her framework of supporting clients through the Seven Pillars of Self-Love™. Yesenia helps healers, leaders and entrepreneurs heal their mind, body, soul and boundaries. She believes in collective healing power as a path to liberation.

Clickable links at www.insixteenyears.com/episode128

Our Spanish episode here.

CONNECT WITH YESENIA:Instagram: @Christianbruja

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Amy speaks with Dr Jocelyn Fitzgerald about vaginal estrogen. We talk about:

-what it is, how it’s different from systemic estrogen, and what options are available.

-the safety information and benefits for genital urinary syndrome of menopause which include urinary and vaginal symptoms.

-its use specifically for patients with endometriosis.

Who is Dr. Jocelyn J. Fitzgerald, MD FACOG, URPS?

Jocelyn J. Fitzgerald, MD is an Assistant Professor of Obstetrics and Gynecology in the division of Urogynecology and Reconstructive Pelvic Surgery at the University of Pittsburgh School of Medicine. She completed her Female Pelvic Medicine and Reconstructive Surgery Fellowship at Georgetown University/MedStar Health and her Gynecology and Obstetrics residency at the Johns Hopkins Hospital. She attended medical school at the University of Pittsburgh and graduated from the Physician Scientist Training Program where she studied overlapping mechanisms of bowel and bladder pain.

Dr. Fitzgerald is the Social Media Editor of the Urogynecology Journal and the Chair of the SGS Social Media committee. Her research and advocacy has focused on mechanisms and misdiagnosis of female chronic pelvic and bladder pain, discriminatory reimbursement and funding disparities in gynecologic surgery and women’s health research, and the role of social and digital media in the online promotion of women’s health.

To contact her: INSTAGRAM and X @jjfitzgeraldmd

Clickable links at www.insixteenyears.com/episode128

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WEBSITE AND RESOURCES: insixteenyears.com

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Amy speaks with an endo warrior from Pakistan. We talk about:

-cultural and societal factors that can impact the ability to receive adequate care-what makes her upset about the endometriosis standard of care-what has helped improve her quality of life physically and emotionally

Who am I speaking with?

She is a 26 years old girl from Pakistan suffering from endometriosis. It took her 7 long years to get a diagnosis, after being dismissed for years and being gaslit by doctors who told her that the pain was ‘in her head’. Relentless support from family and the determination to fight to get an answer to her pain helped her get a diagnosis. It’s difficult to advocate for menstrual health care in a country that has so much stigma surrounding it. It took a lot of courage and strength to get to a place where she could create an online space for people with similar experiences to connect through her Instagram page @EndometriosisPakistan This is just a small step that she hopes will bring about a greater change!

To contact her: INSTAGRAM @EndometriosisPakistan

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

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Today Amy speaks with Dr. Ana Sierra about:

-how neuronavigation and neuromodulation can help patients in pain

-how nerve involvement may play a role in bladder symptoms and leg pain

-what nerve sparing surgery is and why is it important

Who is Dr. Ana Sierra?

Graduated from the Autonomous University of Querétaro, she began her studies in minimally invasive gynecological surgery at the Hospital Español and the London Clinic at Anahuac University.

Dr Sierra is certified in basic and advanced laparoscopy by the The European Society for Gynaecological Endoscopy (both courses held in Clermont Ferrand, France). She also did master courses: Anatomical landmarks and Advanced management of endometriosis (in Dubai UAE). At IRCAD Barretos she also completed an advanced management course for deep infiltrative endometriosis.

Dr. Sierra is certified by the International Society of Neuropelviology level 1 (clinical neuropelveology) and level 2 (neuronavigation and surgical neuromodulation), and is currently a Board member of the society. She works at Instituto Doyenne in Mexico City where her practice focuses on patients with chronic pelvic pain for people of all genders with and without endometriosis and in San Juan del Rio, Queretaro.

CLICKABLE LINKS AT insixteenyears.com/episode126

—4 part webinar series on Neuropelveology

—Amy’s review of the Curable app

—Como duele tener endometriosis - Episode with Dr. Sierra in Spanish on Amy’s Spanish podcast.

To contact Dr. Sierra:

INSTAGRAM @dra_anasierra

DOYENNE INSTITUTE IN MEXICO CITY: https://institutodoyenne.com/@institutodoyenne

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

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People with endo have a range of pain from none to mild to moderate to severe. Amy and Brittany talk about pain associated with endometriosis, such when and where we can have it. We give a quick and general overview of multiple reasons for endo-associated pain, such as inflammation, sensitization, and lesion location. This episode is a bird's eye overview and not an all exhaustive list of reasons why we can have pain with endo.

Clickable links at www.insixteenyears.com/episode125

--What influences pain levels? From Nancy's Nook.

--Location of lesions and where pain is felt. From Nancy's Nook.

--Zanelotti A, Decherney AH. Surgery and Endometriosis. Clin Obstet Gynecol. 2017 Sep;60(3):477-484. doi: 10.1097/GRF.0000000000000291. PMID: 28742580; PMCID: PMC5635831.

--Demco L. Review of pain associated with minimal endometriosis. JSLS. 2000 Jan-Mar;4(1):5-9. PMID: 10772521; PMCID: PMC3015350.

CONNECT WITH US! INSTAGRAM: @in16yearsofendo

WEBSITE AND RESOURCES: insixteenyears.com

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Amy speaks to Dr. Isabel Green about:

—common reasons why a patient may have persistent pain post surgery, from an incomplete excision to co-conditions.

—the importance of working with our doctor to set patient-centered goals in our treatment.

—how for *some* people addressing central sensitization, especially post excision, can be a key to getting out of continued pain; but at the same time, it’s important not to blame all pain on central sensitization and to explore other possible reasons for persistent pain as well.

Who is Dr. Isabel Green?

Born in Ecuador and then grew up in Washington DC, Isabel Green, MD, MEHP, completed her residency in Obstetrics and Gynecology at Johns Hopkins Hospital and went on to fellowship in Minimally Invasive Gynecology at MedStar Washington Hospital Center/Georgetown University.  She moved west to join Mayo Clinic as a Consultant of Minimally Invasive Gynecologic Surgery and Gynecology in 2016.  She serves as the Fellowship Director for Minimally Invasive Gynecology and in the role of Physician Lead of a multidisciplinary Chronic Pelvic Pain Clinic at Mayo, Rochester.

Clickable links at www.insixteenyears.com/episode124

—Addressing pain post excision (from my website)

—Mayo Clinic investigates persistent pelvic pain following endometriosis surgery – from the Mayo Clinic

—Amy’s Curable review

CONNECT WITH DR GREEN.

Twitter/X: @isabelgreenMD

CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears