I’m 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 cycle—and 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 doesn’t condemn you to eternal pain. We all know that life hurts. We all struggle. But pelvic pain is not a metaphor for life. It’s a real ailment with causes and conditions—and 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 SIBO—small intestinal bacterial overgrowth—which, 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.
It’s 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. It’s 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 didn’t 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 hour—not 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. “That’s 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 don’t find anything?” I asked. “I’ll find something,” she said, and she smiled confidently.
It’s a bittersweet feeling to finally name what ails you after so long. On one hand, it’s a relief because you can finally take action. On the other, endometriosis can feel overwhelming. There isn’t enough useful information about it, nothing that encapsulates its all-encompassing nature or defines the all-involving path to recovery—except this book, which is mind-blowingly relatable, relieving, and helpful.
Endo doesn’t just affect the pelvic region. The body’s response to the inflammation it causes sensitizes the central nervous system, and if you don’t know what’s going on—as I didn’t—this sensitization fucks with your head. If your head’s not right, there’s a good chance you’re 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 wit’s 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 didn’t do the physical therapy, because I didn’t 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 I’ve heard of, but it explained a lot about the pain and discomfort—not to mention the emotional stress—I’d suffered from for the past twenty years.
Afterward, Dr. Orbuch insisted on physical therapy. Physical therapy is imperative after shoulder, knee, or any surgery. What’s 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 don’t know why I’m here. I don’t 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 won’t 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.
She hugged me, which I don’t think is required for her job, but I am sure has become a staple of it. She worked on the parts of my body she could at that time, told me this was all normal, and explained the importance of a holistic approach to the recovery. I saw her every week, and she started doing deeper and deeper work. I began implementing her exercises, and slowly, the internal pain lessened. My work with Amy Stein was IMPERATIVE to my recovery. Physical therapy realigned my body after decades of damage.
Two and a half months out of surgery, I was remarkably better. For the first time in more than a decade, I had a pain-free bowel movement during my period. It’s one of those little victories I can’t scream about on the subway, but those of us reading this book will understand. It’s a big deal to take a dump without feeling like a knife is stabbing you through the groin and you want to vomit all over your bathroom floor.
It wasn’t until this recovery process that I realized how pervasive this condition truly is. It affected EVERYTHING in my life. I don’t want to blame it for all my problems, but having a condition you don’t know about for twenty years plays a huge part in making you feel out of alignment, not just physically, but also mentally, emotionally, and spiritually.
It’s simple: To fight this all-encompassing condition, recovery has to be all-encompassing as well.
That’s where this book comes in. It doesn’t just outline a plan to beat endo; it’s also a manual for helping women feel less alone.
I used to be scared of talking about my endometriosis. My greatest sadness, and probably the most costly to my sanity, was this self-inflicted shame. I didn’t know how to talk about what I was feeling without having a name for it, and so I stopped talking about it altogether.
Endo might be an “invisible disease,” but that should not mean that those of us who have it must also become invisible. It’s important to talk about it, to destigmatize pelvic pain, and to look toward solutions. Beating Endo is a way