Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain

Although a male physician could quite easily, and convincingly, assert that ovarian cancer was “silent,” if you were to really listen to women who have had ovarian cancer speak, you’d find that it wasn’t so much that the disease process was silent—but that they were. Conditions that seem to lurk unnoticed in a woman’s body go unnoticed by others because, for one thing, they are an assumed part of womanhood, and, for another, women are taught to keep those pains private. I’ve often found it curious that when a woman is suffering, her competence is questioned, but when a man is suffering, he’s humanized. It’s a gender stereotype that hurts both men and women, though it lends itself to the question of why there is a proclivity in health care, and in society, to deny female pain.

In the face of scary things, knowledge was always a comfort to me. No matter what the subject was, if I could find a book or two about it, I could squash any anxiety that it might provoke. As my heroine Scully once said, “The answers are there, you just have to know where to look.

In retrospect, that was the moment I realized my ignorance was going to exacerbate whatever the problem was, and that I had to prescribe myself some kind of medical education, at least as it pertained to my situation.

I was not a ghost. I was a little girl with needs and wants and allergies. Still, I hung soundlessly, as weightlessly as I could, in the air. The living can haunt a house, too.

Nothing happens in contradiction to nature, only in contradiction to what we know of it. And that’s a place to start. That’s where the hope is.

So often we think that the truth is a static entity that exists only in a singular place--a place that we have to find. But I have come to realize that the answers I have been looking for, the truth of my own body, was ever-changing.

Since we all have varying degrees of tolerance for pain, and have equally varied experiences with different types of pain, it makes the scale feel kind of meaningless -- especially when you consider that the person trying to ascertain how much pain the patient is in has his or her own experiences with pain that are thrown into the mix, too. A doctor trying to figure out how much pain a patient is in, when she says it's 'worse than a broken leg,' but 'not as bad as childbirth,' is still only going to be able to guess what that means based on his or her own experiences -- and perceptions -- of pain.

Although it seems that most people with endometriosis begin having symptoms at or around the time of their first period (whether they know it or not), calling endometriosis a “period problem” doesn’t account for the phenomenon of endometrial lesions found in the pelvic cavities of fetuses. Fetuses who have, clearly, not menstruated. Endometriosis has been discovered during fetal autopsies, a finding that seriously challenges the widely held belief that endometriosis is strictly a menstruation-dependent disease.

But before we can even address the mistreatment that occurs once a woman is interacting with the health-care system, we have to address the fact that some women never get that far. We won’t get a true picture of the incidence of endometriosis until we specifically look for it in marginalized communities. And before we can do that, we have to address the disparity in access. Social epidemiologist Jhumka Gupta has said that endometriosis is a social justice issue. In her speech at the Worldwide Endo March in Washington, DC, on March 19, 2016, she said that endometriosis is a social pathology, which she defined as “gender inequality, social injustice, and attitudes of society that keep women and girls from fully reaching their potential.

Where a woman is in her menstrual cycle also influences how her body metabolizes, well, anything. Researchers know this: that's why, when they do include women in trials, they design the research so that women will be participating early in their cycles, when their hormones are most similar to a man's. Periods, then, have become something of an exclusionary pathology.

Every experience that reaffirmed I had known happiness, and had been capable of love, was wroth grasping for.

In other words, we really don’t know how many people have endometriosis, and why we don’t has far less to do with a lack of scientific research and advancement than with our antiquated belief systems and power structures. But it’s not even that we don’t understand endometriosis on a population level: we can’t even seem to get it right with just one patient.

As for explaining away her physical symptoms (that pesky cough, for one) Freud thought it was caused by a phantom penis—one that only existed in the fantasies of her mind. Dora, he believed, was having unconscious dick-sucking fantasies that were causing her to have a chronic tickling sensation in her throat, which made her cough.