I am writing this not to call you out, or to shame you. Quite frankly, Mr deGrasse Tyson, in your field of study I can’t imagine there was ever any reason for you to learn about dyspareunia. While your dealings with the spectacular universe and exploding stars is important, fascinating, spell-binding work, there is a cosmos within the female human body that I would encourage you to explore — because it is infinitely complex and varied, and there is so much to learn about life here on Earth through the study of it.
Sex was painful for me, a woman in her early twenties, for several reasons. Not least of all was because it’s been culturally normalized for much of my existence to include pain: menstruation, sexual intercourse, childbirth — these foundations of womanhood have pain as a common denominator, and when I was coming of age, it was instilled in me that this was just my lot in life, simply due to biology.
The problem was, and remains, that science doesn’t know how much a normal period should hurt. How much pain during sex is “okay” and not the result of some pathology. Even childbirth, which I have not experienced, is seen as a pain totem; women are judged for not enduring it, for accepting some kind of relieving medical intervention.
Womanhood is a culture held together through our physical pain, yet the medical profession and society as a whole still refuses to acknowledge it.
For the better part of three years, after I became acutely ill and was forced to drop out of college because I was in the hospital more than I was in class, doctors told me that my pain was “all in my head” — and I was very willing to believe them. I didn’t want to be sick. I didn’t want to have some pathological, physical ailment that would take my education, my relationships, my life away from me before any of it had really begun.
As I lay curled up on gurneys in hospitals, I did not want to be there. I wanted to be in the lecture hall, the laboratory, the dance studio. I wanted to be with my friends. I did not want to be in pain.
It wasn’t until I began having sex that I realized the extent of my pain, because when it began I had been a virgin. I could not tell the doctors if sex was painful because I had not had it yet. I knew that I could not wear tampons because they hurt. I knew that desperate attempts at masturbation was disappointingly uncomfortable, as though my reproductive organs were all knotted up and any jostling at all was like a punch to the gut. I knew that my routine gynecological check-ups hurt so much that I would cry, and the doctor would always frown and say, “Now that’s not normal . . .” yet they would do nothing further, because it wasn’t that my pain was perhaps abnormal, just my response to it.
Couldn’t I just suck it up?
I engaged in sexual intercourse, despite the fact that it was painful, for many years. I did this because the people in my life — my partner, my doctors, the Internet at large, told me that it was normal and I just had to learn to deal with it. I just had to find a position that was “more comfortable” — not good, mind you, not enjoyable — merely “tolerable.” I should do more Kegel exercises. I should, perhaps, try physical therapy for my vagina — which was probably just not used to The Great Phallus of Man, despite the fact that I had been, like all women, getting systematically fucked by it in regard to the patriarchal society into which I was born — through another misunderstood and under-appreciated vagina, I might add.
So, for years I tolerated sex that was painful because that’s what I was taught to do. That was just what women did. It was what my partner expected me to do. And at last, when I finally could not take it anymore, when I could not hide the bleeding, the tears and the pain, I went back to the doctor.
And I took my male partner.
And when he said, to a medical professional, that my pain was impacting our sex life, that he was no longer satisfied, all of a sudden it became a crisis. My pain, in and of itself, had never been valid. It had never mattered.
But the moment it became an inconvenience to a man — when it directly impacted the quality of a heteronormative sexual relationship — well, then it became A SERIOUS PROBLEM that was worthy of attention.
Still, they were reluctant to open me up because they did not think any physical explanation existed. Even though, when I had first gotten sick years earlier, they had opened me up and found a large cyst on my fallopian tube, which had twisted it, as though someone was wringing it out like you might a damp towel. They found spots of endometriosis but did not know what to do about it, so they did nothing.
But despite this, the surgeon still said to me,
“You are either brilliant — or the most educated hypochondriac I’ve ever met.”
He told me that he’d do another exploratory surgery, just to humor me. He told me that he if he found nothing, he would have to discharge me from his practice because there was nothing left he could do for me.
I had taken to him research that I had done, independently, showing that endometriosis could grow basically anywhere, and that in addition, it was possible for the appendix to become chronically inflamed. It was rare, but I fit the symptom profile. It seemed possible to me that endometriosis, or even just a low level of inflammation that became chronic, could cause a person plenty of problems: be in the chronic nausea I dealt with daily, or the painful sex, or the painful bowel movements and urination, or that sinking feeling whenever we would go over a bump in the road when my boyfriend and I were driving around our rural town, that something was inside of me waiting to rupture.
My pain was real, Mr deGrasse Tyson. And I had been correct in my diagnosis. Unfortunately, it had come far too late and damage had been done. And the underlying chronic inflammation, the endometriosis, had been so pernicious and invisible — to everyone but me — that I would continue to have pain, I would continue to get no joy from food, from sex, from dance — from all the primal pleasures I am here on Earth to enjoy, because the men and women of medicine did not believe my pain was real.
I know that in your line of work you do not require this education. But you are a human being. You are a husband. You have a daughter. No doubt you have female colleagues that you respect. No doubt you have students who you want to watch prosper and thrive because of your teaching.
I had professors like you in college, and when I got sick and had to abandon my studies, they were so disappointed. And it broke my heart to think that I had let them down.
Despite what my pain, what my disease, took away from me, I’m devoting what quality of life I have to educating others. I’m writing a book, which has been already purchased by a major publisher. One that is even bigger than McGraw Hill, which published many of the textbooks I referenced when I was trying to get to the source of my very real, very observable, very quantifiable pain.
In your tweet, you assumed that a species that experienced painful sexual intercourse would go extinct. And in fact, I agree. I feel that without the pleasure of sex, without the pleasure of food, without enjoying dance and music the way that I once did, without being able to spend time with my friends and loved ones in nature, or traveling, or even just having an evening out to dinner, I have become an endangered species myself.
I will be 25 years old next month and I would not be at all surprised if, at some point in the next 25 years, I do become extinct. Because there is little interest in addressing, treating and researching the pain that I live in. I am still expected to “grin and bear it”, even as it exhausts me so that I cannot physically get out of bed.
The women suffering from painful intercourse are not extinct yet, Mr deGrasse Tyson, but we are frightfully close to getting there.
Very sincerely and with all due respect,