"My Pain, In and of Itself, Had Never Been Valid'

Editor’s Note: This article previously appeared in a different format as part of The Atlantic’s Notes section, retired in 2021.

A reader, Abby Norman, revives one of the most popular discussion threads in Notes thus far—on female medical pain:

I’m so thankful for your reader series, sparked by Joe Fassler’s piece, which was sent to me by my agent. I’m currently under contract with Nation Books writing about my experience with this exact phenomenon: the normalization of female pain in our culture that leads to these harrowing stories of mis—or missed—diagnosis. I’ve written about it frequently, specifically as it pertains to endometriosis. I also run a Medium publication called Ask Me About My Uterus, where I interview women about their menstrual history and curate essays (I wish some of your contributors to this series would contribute—those stories made me tear up with recognition and overflowing with empathy.)

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.

I was determined to try to have a normal life regardless my constant, exhausting pain. My early 20s were defined by engaging in sexual intercourse, despite the fact that it was painful. 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.

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 this time, thinking he’d validate my experience. I’d often had female friends “vouch” for me in the hospital, but that hadn’t had much impact. Maybe they thought it was some kind of mass hysteria.

When my then-boyfriend confirmed 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, 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.

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 torqued 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, when I pressed him to look for a cause I was convinced was there:

“You are either brilliant — or the most educated hypochondriac I’ve ever met.”

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 research to him that I had found 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 only relieved by near constant doses of Zofran, 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, and I had been correct in my diagnosis. Unfortunately, it had come 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 my pain still wasn’t real enough.

When I started writing about it, I was shocked by how many women emailed me or tweeted me saying “this happened to me!” or worse—“this is happening to me right now and I feel powerless”—so, there’s my motivation for the book. I was just relieved a publisher bought it, because it’s not like talking about menstruation or women’s bodies outside of the politicization of them is a popular topic. Discussion of our bodies has been politicized and stigmatized to the point where it’s costing women their lives.

Thank you so much for this series. I hope that women continue to feel empowered to share their stories. We mustn’t keep suffering in silence.

Update from another reader, Victoria Sawyer, who also suffers from endometriosis but who emphasizes that all of the doctors she struggled with happened to be women:

I just finished reading many of the stories on your page about Misunderstanding Women's Pain. I have experienced this myself!

I had been having mysterious symptoms after coming off the birth control pill. The worst of these was excruciating pain with urination. Every time I was tested for a UTI, I didn’t have one. During one of my UTI tests, my primary care doctor mentioned endometriosis, a disease I had never heard of before. I did research online and based upon my symptoms, I was fairly certain that I had this mysterious and, yes, devastating disease.

My first consultation with my OBGYN, I was told that my periods weren’t heavy enough so I couldn't possibly have endo. Eventually I went to a consultation with a different doctor for a second opinion because the symptoms were not resolving and I was miserable. This doctor (also a female) listened to my symptoms, but as soon as she heard that I also suffer from anxiety, she was certain she had a diagnosis: All my physical symptoms were cause by my anxiety.

When I heard this, I started to cry. I wasn’t crying because she was right or because I have anxiety, I was crying because I was enraged. I couldn’t believe this doctor was telling me that my symptoms were caused by anxiety!

I’ve had anxiety for years, so I’m intimately familiar with how it makes me feel and it has given me a better understanding of my own body.  And I knew that how I was feeling now was new and not anxiety related. To hear her tell me it was all in my head reminded me of other doctor appointments where I was told every physical symptom I’ve had is caused by anxiety. Every time it happens I feel dismissed and as if they are calling me crazy. I was so angry! My symptoms were not taken seriously!

Later, after seeing a bladder specialist who scoped the inside of my bladder and found inflammation and redness that led her to believe something could be happening on the outside of my bladder, I finally found a sympathetic doctor who agreed to do a laparoscopy. After surgery, it turns out I have endo on my bladder and my bladder and uterus were fused together, hence the insane pain with urination that wasn’t going away.

I still find that doctors are not sympathetic to endo, nor do they seem to know much about it. There are many communities of women online devoted to endo where you can read the plethora of symptoms related to this disease. If you bring these symptoms to your OBGYN, they will tell you they are unrelated. Most doctors, even those who claim knowledge of the disease, are not educated about all the symptoms, nor do they know how to treat it.

I have been given birth control pills that muffle the pain, but they by no means make my life whole.  I still often experience cramps, feel exhausted, nauseous, bloated, etc. My quality of life is simply not as good as I wish it was, but I know if I go to see my doctor, they will dismiss my symptoms or simply shrug their shoulders and act like there's nothing they can do for me.  It's a very demoralizing experience, to say the least.

I have no experience with how men’s symptoms or diseases are treated, so I cannot say if my experience is due to being a woman.  I will say that all of my doctors have been women, so it’s not just male doctors who will ignore a patient’s pain or dismiss our experiences outright.

I feel like somehow the medical community has come to believe that all of us are anxious hysterical hypochondriacs. I’m not sure how this
happened, but I think it needs to stop. We’re not all a bunch of
idiots who have no idea what’s happening to our own bodies. In many
cases, through online searches, we’re more informed than the doctors
we go to see. How is that possible? Are doctors not required to keep
up their knowledge base? It seems that many of my doctors have been
going on outdated data. This is a sad state of affairs for those of us
with constant pain.

If any doctors or other medical professionals would like to weigh on on this story or others, please email hello@theatlantic.com. So far we’ve only gotten perspectives from patients, so it would be interesting to get a sense of the other side.