Bioethics Forum Essay
Lena Dunham’s Lesson for Doctors
In a recent essay in Vogue the actress, writer, and director Lena Dunham described her decision to have a hysterectomy at age 31 after a decade of unsuccessful attempts to control increasingly excruciating pain from endometriosis. The decision was difficult because it meant that she would never be able to become pregnant, something she had long dreamed of, but also because her health care providers did not take her pain seriously.
As a gynecologist who specializes in surgery for women in pain, I would like to say I am shocked to hear of her experience. Unfortunately, I’m not.
I am frequently the fourth, fifth, sixth, etc. surgeon a woman in pain has approached for help. Over the course of her life she’s been told that the excruciating pain she experiences during menses is “normal” or even “expected.” She’s been ignored or stigmatized during multiple emergency room visits, feeling the side glances and hearing the mutterings behind drapes that perhaps she is “drug seeking.” She’s sat through multiple visits and exams with physicians who have told her that imaging shows “nothing,” she needs to “get used to it” or find a way to “take her mind off it.” It’s only “once a month.” These women are prisoners of their reproductive organs. At least two weeks or more of any given month is spent in pain. Half their lives, every year.
Dunham was able to force the issue, refusing to leave the hospital until she was heard. Few patients can do this, given the potential financial implications. Yet she still had to write a letter “pleading her case” and submit to a psychological evaluation.
Her physicians may have sought to protect her from “risk of regret” — commonly defined by literature dating most recently to 1999. These studies note that a woman under the age of 30 has a slightly higher chance of regretting a decision to end her fertility (typically by tubal ligation or removal). What is forgotten is that in these studies most women did not regret their decision. Fewer than 6 percent of women over the age of 30 regret their decision.
Given these statistics, and, more importantly, simply because I trust my patients to make the right decisions for themselves, I defer to women whom I meet as patients and who tell me “it is time” for a hysterectomy. None of them have come to this decision lightly. If they understand the benefits and risks of the course they wish to take, I proceed, typically after no more than one-to-two hours of consultation at most. I certainly don’t require an evaluation of their psychological fitness to make decisions about their lives and their reproduction. This is a paternalistic reaction that should be avoided.
We fail our patients when we don’t trust them. When they present to us as young women in pain, we must listen. Providers who are not equipped to fully evaluate patients for endometriosis — which can be incredibly complex – should refer them to doctors who are expert and will provide this care. When all has been tried and failed we must stand by our patients and help them proceed with difficult but necessary decisions. And we must devote more funding to this disease. While the true incidence is unknown, endometriosis is estimated to affect up to 15 percent of women of reproductive age in the U.S., and yet it has few reliable modes of treatment.
I commend Dunham for her courage not only in forcing the issue with her treating physicians, but also in being willing to share her experience.
Louise P. King, MD, is an assistant professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School and co-editor of a Hastings Center special report, Just Reproduction: Reimagining Autonomy in Reproductive Medicine.