Iris Kerin Orbuch - Beating Endo: A Holistic Treatment Plan for Endometriosis

Dedication

To the one-tenth of all women on earth who are estimated to have endometriosis, and to those among them who have been our patients

Contents

Cover

Title Page

Dedication

Foreword by Bojana Novakovic

Foreword by Susan Yeagley

Introduction: Beating Endometriosis

What Is Endo? The Disease Process of Endometriosis

The Goal: Regaining Quality of Life

Endo and the Bodys Core: Why Physical Therapy Plays an Essential Role

Endo and the Bladder

Endo and the GI Tract

Endo and Sex

Pain, Disease, and the Central Nervous System: A Multimodal Strategy for a Multidimensional Disease

Endo and Nutrition

Endo and Your Environment

Endo and Your State of Mind

Excision Surgery

A Special Case: Endo and Teens (but This Chapter Is Not Just for Teens!)

Endo and Infertility

Reclaim Your Life

Acknowledgments

Resources: Information, Treatment, Support, Advocacy

Notes

Index

About the Authors

Copyright

About the Publisher

Foreword

Bojana Novakovic

I had pelvic pain for more than two decadesand didnt know why. As a teenager, I was told it was normal for girls to have painful periods; when I became sexually active, I was told it was normal for sex to hurt. A laparoscopy in 2005 came up negative for endometriosis; I now know the surgeon most likely did not know what she was looking for. Because endo had been ruled out as a cause, I was told the pain was in my head, or that sex hurt because I was uptight and anxious. Everyone I turned to pointed the finger back at me, so I started looking inward. My anxiety increased; the more pain there was, the more I worried that I was doing something wrong. This cycle of confusion, pain, and discomfort wreaked havoc on my mind, body, and central nervous system for fifteen years.

Im no scientist, but I can say with complete confidence: There is nothing normal about knife-stabbing pain during your period, nausea with bowel movement during your period, burning, itching, tingling pain sporadically throughout your cycleand definitely nothing normal about pain during intercourse. Even though women go through the painful act of childbirth, PAIN IS NOT SYNONYMOUS WITH BEING FEMALE. Possessing female reproductive organs doesnt condemn you to eternal pain. We all know that life hurts. We all struggle. But pelvic pain is not a metaphor for life. Its a real ailment with causes and conditionsand it can be treated.

My cause was endometriosis, but it lasted so long that I grew used to its symptoms and figured out how to put up with them. In November 2017, I started to experience severe lethargy and intestinal pain that six months of testing finally identified as SIBOsmall intestinal bacterial overgrowthwhich, like endo, is an inflammatory condition. By that time, I was also seeing a physical therapist specializing in pelvic pain during sex. Both the GI doctor and the physical therapist suggested I see Dr. Orbuch, proposing that the symptoms I was experiencing could be from long-standing endometriosis.

Its difficult for an intelligent, well-read, independent woman like myself to contemplate that what a medical expert had once assured her was not the cause of her lifelong pain might well have been the cause all along. Its hard to come to terms with the fact that the medical professionals got it wrong, and that maybe I should have listened to my body. Instead, I didnt have time to keep digging or the confidence to tell the pros how to do their jobs. I had a life to live and ambitions to attend to, and the experts kept telling me the pain was just something I needed to live with.

Dr. Orbuch and I spoke for over an hournot the usual fifteen minutes allotted by insurance providers for these appointments. We discussed my symptoms dating back to when I was a teenager. Is this the pain you feel during sex? she asked during my internal exam. I jumped in agony. Thats endo, she said.

In my twenty years of visiting various professionals, no one ever found the pain I feel with such precision. It was obvious that Dr. Orbuch knew what she was talking about.

We discussed surgery; the only way to actually diagnose endometriosis is a biopsy. I was afraid the same thing would happen as almost fifteen years before. What if you dont find anything? I asked. Ill find something, she said, and she smiled confidently.

Its a bittersweet feeling to finally name what ails you after so long. On one hand, its a relief because you can finally take action. On the other, endometriosis can feel overwhelming. There isnt enough useful information about it, nothing that encapsulates its all-encompassing nature or defines the all-involving path to recoveryexcept this book, which is mind-blowingly relatable, relieving, and helpful.

Endo doesnt just affect the pelvic region. The bodys response to the inflammation it causes sensitizes the central nervous system, and if you dont know whats going onas I didntthis sensitization fucks with your head. If your heads not right, theres a good chance youre in distress. This is where endo crosses the line from a physical ailment to an emotional one too.

On the physical level, learning to live with the pain during most of my adult life compromised my pelvic floor. Without knowing it, I was compensating for the movement of organs over decades and developing postural habits to avoid painful intercourse. At the same time, I was also putting up with excruciating periods and bowel movements, chalking it up to the fact that I was a busy, stressed, ambitious person.

By the time I met Dr. Orbuch, I was at my wits end. But being able to talk with her, to ask questions and receive answers, was the beginning of a new chapter. I never looked back.

First, she asked me to change my diet and start seeing a physical therapist regularly. Let me be honest. I balked. I was a healthy woman who regularly exercised. What difference would a new diet and more money spent on physical therapy make? Let me save anyone from having the same doubts: WHAT SHE ADVISED HELPED! Sticking to an anti-inflammatory, low-potassium, low-acid, dairy-free diet hugely lessened my random pelvic burning and meant almost no pain during intercourse. I didnt do the physical therapy, because I didnt believe it would work. That came later. Again, please learn from my mistakes: Do it immediately!

On December 17, 2018, I underwent excision surgery. Four hours and five incisions later, I woke up to discover that fourteen pieces of endometriosis, ranging in diameter from two millimeters to two centimeters, had been pulled out of my abdomen. Endo had grown as far up as my diaphragm. It was so invasive that some implants had obliterated the cul-de-sac between my cervix and rectum, pushing my uterus all the way to the left side of my pelvis. My case is certainly not the worst Ive heard of, but it explained a lot about the pain and discomfortnot to mention the emotional stressId suffered from for the past twenty years.

Afterward, Dr. Orbuch insisted on physical therapy. Physical therapy is imperative after shoulder, knee, or any surgery. Whats the difference? My body formed physical habits to fight the pain and it needed realignment. My organs, particularly my colon and uterus, had been pushed to places they did not belong. I needed help.

That was when I met Amy Stein. I walked into her office a week after surgery and burst into tears.

I feel like everything is falling apart and this is never going to end, I cried as I fell into her arms. I dont know why Im here. I dont like physical therapy. I can just breathe and meditate through this, my boyfriend is being weird, my whole family is here for Christmas, the pain wont go away, and every time I think about something I have a surge of anxiety that rushes from my groin all the way up to my heart. I kept crying.