Beating Endo. Dr Iris Kerin Orbuch

of endometriosis; it is as standard in the United Kingdom as it is in the United States and just about everywhere else.

      Sarah underwent the procedure and felt some relief—at least for two cycles of her period—so she fully expected that the pain would continue to diminish. Instead it returned, worse than ever. Her surgeon examined her again and told her, “There is nothing else I can do.”

      Meanwhile, Sarah met, fell in love with, and married an American and moved with him to a midsize town in a midsize state in the American Midwest. Her pain, which was not confined to her menstrual cycle but persisted with no rhyme or reason, was becoming disabling again, so she made an appointment with a local gynecologist, who told her that while he could perform a second ablation surgery, he did not think it would work to alleviate her pain. Instead, noting her complaint of bladder pain, he referred Sarah to a urologist.

      The urologist diagnosed chronic urinary tract infection and put Sarah on a course of antibiotics. Once again, the relief she felt was gratifying—for the three days that it lasted. Then the pain returned again, worse than ever. But Sarah finished the full course of antibiotics before she went back to see the urologist again.

      His solution was to try another round of antibiotics, which this time brought virtually no relief at all. This prompted an intense round of questioning to compile more details in a search for answers. What the doctor learned from this was that in addition to bladder problems, Sarah suffered from severe constipation—and was unaware of it. She typically moved her bowels once a week, had always done so, and thought it normal. Sarah was now referred to a gastroenterologist.

      The gastroenterologist prescribed a daily pill and a daily stool softener. As was now usual—expected, anyway—Sarah felt a bit of relief at first, but after four months, there was no substantive improvement in her condition.

      A friend of her husband’s suggested she see an endocrinologist, and an increasingly desperate Sarah made an appointment. The endocrinologist prescribed thyroid medication to raise Sarah’s low thyroid levels and, having noted for years a correlation between endo and autoimmune conditions, confirmed the possibility that Sarah might have an autoimmune disease. And, since the word endometriosis was floating in the air, he also suggested that Sarah get in touch with a New York–based endo specialist—namely, Iris.

      Certainly, Sarah had traveled a long way since her family doctor back home in England told her that her pain was something she would “just have to live with,” so the prospect of a trip to New York seemed but another step in the journey and certainly worth trying. That was how she came to be in Iris’s office, where she answered Iris’s rash of questions, went through Iris’s hands-on, extensive physical examination, and heard Iris proclaim that there was “a high likelihood” that Sarah had endometriosis. Iris also recognized that Sarah’s pelvic floor muscles were extremely tight and sent her to Amy for physical therapy. Together, they prescribed a program for Sarah: It would start with understanding the disease process, changing to a low-acid, low-potassium, anti-inflammatory diet to address her interstitial cystitis/painful bladder, getting up and moving and beginning a specialized physical therapy program, moderating the disease’s impacts one by one, undertaking a program of mindfulness through meditation, yoga, qigong, or tai chi—and downregulating the nervous system as preparation for excision surgery, when the time was right.

      The prospect was daunting. But the alternative was unthinkable. If her suffering was needless, if she could beat the disease that was beating up her life by taking action, it had to be worth whatever effort, whatever programs, whatever life changes were called for. It was time to start.

      After four months of physical therapy, a mindfulness program, downregulating her central nervous system, and cooling her body, Sarah underwent excision surgery. Post-surgery, she resumed her PT and continued her other new lifestyle practices—and regained her life.

      There would be no point in asserting that for any or all of these women, what happened next was smooth sailing to a life without pain or discomfort. There was little about what each of them undertook that was smooth, and it certainly was not effortless. But as their bodies benefited from the new habits and practices, and as their minds gained the ability to differentiate among the sources of pain, the self-empowerment became palpable. They understood their own disease process, and they had a process for combating it.

      Iris likes to explain it using the classic image of a young child accidentally putting her hand on a hot stove. You probably did that once, and if you did, you pulled your hand away immediately, almost automatically, as the nerves transmitted the message of pain via the spinal cord to your brain, which instructed you to get that hand off that horribly painful thing.

      That is acute pain. It hurts, but after a while, it is gone. But while acute pain is entirely different from the chronic pain of endo, the image is still apt: Endo-driven condition by endo-driven condition, our program for beating the disease shows you how to lift hands off a hot stove. Endo is one hand on the stove. Pelvic floor dysfunction is a hand on the stove. Painful bladder is another. Anxiety and depression are two more hands on the stove. An overagitated, overworked central nervous system, kindled by these conditions and burning hotter and hotter as the conditions persist, is yet another. To beat endo, you must lift all the hands off the stove.

      As you do so, you begin to register which hand is being lifted; you recognize the nature of the pain and can trace its source. Such understanding is incredibly important to your well-being, because it puts you in control of your disease process. That is exactly how it worked for Elena, Taylor, and Sarah, and it is how it will work for you.

      Can there be lapses? Of course. Both of us note a definite, collective lapse among our patients during the winter holidays—and an accompanying flare-up in those women’s symptoms. Iris says it typically starts at Thanksgiving, the annual kickoff date for a month of not adhering to any diet plan and of drinking enough wine that patients stop caring that much that they are not adhering to their diet plans. Then they’re too busy to go to their PT sessions regularly, says Amy, and their schedule leaves them little time for even setting out on a brisk walk. This is surrounded by all the legendary stress of the season, and all the expense and the pressure and the delights and occasional dysfunctions of being with family—right up until New Year’s Day, when a lot of patients typically go on a health kick that can often be just as much of a shock to the system as Thanksgiving dinner was.

      Remember: We don’t promise you a cure. Not yet. What we do promise is a way to equip yourself in body and mind to overpower the disease that has been dominating your life. We promise to put you back in the driver’s seat of your health and your future.

      Ready?