Beating Endo. Dr Iris Kerin Orbuch
the point where she finds the pain—both during and after sex—hard to bear.
She had been to see her gynecologist about much of this. His recommendation was that she have a glass of wine and maybe do some gentle yoga. Taylor already drinks wine and does yoga, although not the gentle kind, so she didn’t find this advice terribly useful.
She decided to see an orthopedist about her hip pain and the pain she felt while seated. He ordered a diagnostic imaging test, and sure enough, it showed a labral tear in Taylor’s left hip. What a relief it was actually to stare at the image of what was causing her pain! Despite the surgeon’s warning that it would take six months to heal completely, she went ahead with the labral tear surgery and then began six months of hip PT geared specifically toward full recovery.
The operation was deemed a success by her orthopedic surgeon. That is, the labral tear was successfully repaired, and Taylor enjoyed slight relief from her hip pain. But the relief was minimal in comparison to all the other discomforts that remained with her—the menstrual cramps, her problems with her bowels, the tailbone pain that she felt sure would recede along with the hip pain but that did not. Above all, she was still having pain during sex. In fact, it was getting worse, and it was making her anxious and depressed.
Taylor tried another gynecologist. Sitting in his office, watching him take copious notes as she answered his questions, she noticed a book on the shelf behind him: Heal Pelvic Pain, it was called, by Amy Stein. She got her hands on a copy and began doing the exercises it offered.
She started to feel better, and Taylor expected that, along with the running and CrossFit that were her normal fitness routine, the pain would recede.
It did, and the bowel urgency also improved, but not enough. And the pain during sex persisted, which was extremely discouraging. Taylor wanted a cure; she also wanted a real diagnosis. She worked so hard at becoming fit and strong and healthy. Being a “healthy person” was a big part of her identity, and the inability to heal her symptoms was emotionally as well as physically painful. There had to be something wrong.
So Taylor made an appointment with the author of Heal Pelvic Pain and proceeded to Amy’s midtown office. She narrated her story, answered Amy’s many questions, and told her what the gynecologist had “prescribed.” Amy was pretty convinced she was hearing the classic symptoms of probable endometriosis—and, in the gynecologist’s “prescription” for a glass of wine and gentle yoga, an unfortunate bit of medical ignorance. After an extensive, head-to-toe external and internal examination with a focus on the abdomen, hip, pelvic floor, and tailbone, the pain points Taylor had complained about, Amy came to a far different conclusion and recommended a far different prescription.
She suggested a number of changes in Taylor’s lifestyle. First thing, said Amy, would be to slow down the high-intensity running and CrossFit, both of which Amy was sure were aggravating the pain in Taylor’s hip and tailbone. Second was a radical change in diet and eating habits: Amy suggested Taylor cut way down on the orange cosmo vodka martinis and focus instead on the bowl of nuts that accompanied them. “You need to go on an anti-inflammatory diet,” she told Taylor, “but given your bowel issues, you also need to eat a lot of the right kind of fiber and to drink plenty of water along with that.” She spelled out what she meant: “Everything organic! I suggest steamed vegetables and fruits, organic, wild-caught fish high in healthy fat—their omega fatty acids can lower inflammation—chicken and lean meat for protein, plus beans and the nuts.” A change in diet, Amy assured her, could be the first step toward calming the bowel urgency and establishing regularity. For the menstrual pain, Amy was okay with Taylor continuing with the Advil for a while, but, suspecting that Taylor had endo, thought she might want to see an endo specialist. As for the pain during and after sex and for the hip and tailbone pain, Amy outlined a highly specific program of physical therapy—along with cutting back on the running and CrossFit. When Taylor objected to giving up her high-intensity favorites, Amy countered that Taylor needed “to let the hip and tailbone pain calm down. That’s the first layer of the onion you have to peel off.” She added, “Try the elliptical machine and a brisk walk—even a fast walk—instead.”
It was a simple program: behavior modifications to downregulate Taylor’s entire central nervous system, one upregulated condition at a time. Over the course of three months, she began to experience definite improvement, as she reported back to Amy. But she was having trouble giving up her exercise routine.
“Okay,” said Amy, “but not giving up the CrossFit and running may actually be slowing the downregulation process. You’re going into hyperdrive to burn fat and calories, and your body can’t recover sufficiently. I really urge you again to switch to an elliptical machine in place of running. Just give up the high-intensity stuff until your system calms down, and in time, you will be able to slowly and carefully go back to it. Right now, instead, do some yoga, but not power yoga—the gentle form. And let me tailor a program of exercise for you that focuses on cardio, stretching, and some very specific hip and core strengthening.”
This time, Taylor agreed to change her exercise routine, to continue with the changed behaviors she had already initiated, and to keep up the weekly PT sessions Amy had prescribed. Three months later, she felt almost entirely “cured.” The two symptoms that still bothered her were the menstrual cramps and painful sex. Amy again emphasized that Taylor really needed to see an endo specialist and “get educated” about her disease process. “Not all ob-gyns are as knowledgeable as I would wish about what I suspect is happening to you, so let me refer you to a specialist.” She referred Taylor to Iris for a full consultation and a thorough examination.
For a start, Iris did her usual thorough history and physical exam. In the latter, she discovered the same sort of thickened ligaments behind the cervix she had seen in Elena—plus a uterus tilted backward; Iris could palpate the area to reproduce Taylor’s pain, and this confirmed her suspicion that Taylor most likely had endo. In fact, Iris estimated a 90 percent probability.
But since Taylor wasn’t yet ready to undergo surgery, Iris first recommended birth control pills to subdue the monthly pain, cautioning Taylor that the pills would treat only her symptoms, not her endo. “The birth control pills won’t keep your endo from progressing,” Iris cautioned her, “but they’ll relieve some of your symptoms.” Second, and conceivably more important, Iris had an extensive talk with her about the disease she was pretty certain Taylor had. She said she thought it likely that Taylor’s endo was decreasing her ovarian reserve and could compromise fertility later on, and she suggested to her that she might want to consider freezing some of her eggs because, while fertility decreases in women without endo at about age thirty-five, women with endo need to face potential fertility issues at an earlier age—in Taylor’s case, right now. Knowing this could be empowering for Taylor. “Come back and see me in three months,” Iris said as she handed Taylor the prescription for the birth control pills.
It was a wake-up call, and it worked. Certainly, the lifestyle changes and physical therapy had downregulated Taylor’s system, alleviated her hip and tailbone pain, and helped improve her bowel symptoms. Sex was less uncomfortable since she started doing PT, although deep penetration still hurt. The pill had also helped her menstrual cramps—she only needed a few Advil a day, not twelve. She had regained a good measure of quality of life by changing significant aspects of it. At that three-month follow-up, Taylor got a refill prescription for the birth control pills, a reminder that the endo inside her was still progressing, and a lot of knowledge about the need to seek out an excision specialist—wherever her career might take her.
For Taylor, along with the benefits of relief from symptoms was the reality of having to contemplate what the presence of endo could mean for her future. It was time to admit that she was up against a reality she could not dodge and a fact she might have to confront at any time. If her pain worsened, if her body responded in new ways to the disease process inside her, she had to be ready to respond with new strategies. Self-governance was important to Taylor; she felt good about all she had achieved in so effectively cooling her nervous system—and in general, in living a healthier life.
SARAH
Sarah, a transplanted Londoner, had suffered severe abdominal pain and disabling menstrual cramps