A very distressing—and far too typical—letter came us recently from a woman in Ohio, written on the eve of her twenty-sixth birthday. Karen described her tangled history with endometriosis, beginning with her final decision: the prior week, she wrote, she had signed a document giving her doctor the right to perform surgery to “clean up the endometriosis and save as much of my organs as possible.” Her letter went on to detail her story:
For two years she had suffered from cramps, bleeding, and intense abdominal pain. One afternoon a cyst ruptured as she was driving to work. Miraculously, she got herself out of the car and Ragged down a good Samaritan who took her to a hospital, where she was given emergency surgery.
At this point, Karen did not know she had endometriosis. After surgery, her doctor put her on tranquilizers for her continuing pain; then he followed up with hormone treatments to quell her menstrual cramps. She subsequently had two miscarriages and her doctor ran some tests on her, including a laparoscopy (the surgical procedure that enables doctors to see into the pelvic area). It was then finally that he discovered endometriosis!
“My doctor was very comforting.” Karen said in her letter, “and I’ve always trusted him. He said there was a slim chance that I’d need a hysterectomy, but he’d try to save what he could. Of course, I heard the words I wanted to hear: he’d save me. I woke up from surgery and he told me the news. He hadn’t saved anything and he’d given me a hysterectomy. That ended it for my ever having children and I wasn’t yet twenty-six years old! I felt as if I’d been butchered, like a human sacrifice! But if he said I needed a hysterectomy, who should I believe? He also said that, in another month, I would have to go on estrogen supplements since he had removed both my ovaries, too. Was he wrong? What would you do?”
This woman’s castration was presented to her after the fact as the only answer to her problem. Her surgery was needless. Had she seen a specialist in endometriosis, we feel certain that she could have had a chance at recovery. Touting her doctor may have given her a measure of comfort, but this was not enough. As we see it, when her doctor operated, he did not have the expertise to understand that the internal bleeding was caused by endometrial masses. Doctors who do not have a trained eye can miss the condition in its earliest stages, even when it is literally at their fingertips. They may mistake it for something else—an infection or even cancer. This doctor’s choice of treatment – complete hysterectomy—harks back to what was common practice over a decade ago for such “far-gone” cases. That this physician subsequently prescribed hormones in the form of estrogen replacement so soon after surgery indicates another gap in his knowledge.