Notes
First thoughts, running arguments, stories in progress
Stories of Misunderstanding Women's Pain
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Below are all the stories from female readers recalling times when doctors dismissed, downplayed, or misdiagnosed their painful health conditions. The series was sparked by Joe Fassler’s account of his wife experiencing an ovarian torsion that went undiagnosed for an excruciatingly long time. To join, email hello@theatlantic.com. (If you’re a doctor or other medical professional who has a perspective to share, it would be great to hear from the other side of the examination table as well.)

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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.

Our reader series of women recounting stories of medical pain—and the doctors who often misdiagnosis it—ran in eight installments last fall. But suddenly this week we got two more emails, so perhaps the series is still getting passed around a lot. In any case, these new stories are compelling in their own right. This reader struggled with multiple health problems:

When I was seven months pregnant with my third child, my doctor put me on bed rest because my cervix was basically non-existent it was so thin, exactly like my previous two pregnancies (both of which I was on bed rest, and both of which I delivered four weeks early). Four weeks before my due date with baby #3, I spent the better part of the day in excruciating agony but refused to go to the hospital because it did not feel like labor pains.

My husband took me anyway, and they determined that I must be in labor, even though I wasn’t dilated at all and kept trying to tell them the pain was in a different part of my abdomen—more under my ribs and in my back. A medicine was given to me to start labor and a few hours later my son was born four weeks prematurely. (He is eight years old now and still suffers with his lungs and other physical issues due to his early delivery.)

But my pain didn’t go away.

A reader revives the thread of women telling personal stories of how their painful health condition went undetected or misunderstood by medical officials:

I read Joe Fassler’s piece last month, and just heard his interview on NPR. My circumstances 11 years ago were slightly different and I nearly died, and I say that with absolutely no exaggeration. It infuriates me to hear this is all too common.

In 2004, I recently moved back to my hometown (Kansas City) and started a new job. On a Saturday night I was getting ready to go out and meet friends for drinks. Shortly before I left my apartment, I doubled over in indescribable pain.

Another reader adds her story to the series on women’s health:

My husband read Joe Fassler’s piece the other day and immediately told me, “Hey, there’s an article on The Atlantic that sounds just like what happened to you.” After my second C-section, I initially felt great, but within a week, I started having severe abdominal pain. I went to the ER, and the on-call doctor did a cursory exam and told me he thought there was nothing seriously wrong with me because I wasn’t running a fever. He sent me home with a few Vicodin and told me I should think about seeing a psychologist for postpartum depression.

The pain continued to worsen, and I saw my own OB first thing the next week. She immediately sent me for an ultrasound and found that I had retained placenta that had turned into a uterine infection. I ultimately needed two surgeries to remove a fallopian tube and later an ovary. If the ER doctor had taken my pain seriously and asked about my bleeding, I could have been given antibiotics and potentially avoided all of the complications.

Speaking of retained placentas, Suzanne Nguyen wrote an Object Lesson on the organ:

I had not given much thought to placentas until the one inside me refused to come out. ...

A remaining email from a reader on the women’s health thread:

Thank you so much for covering this issue. While I haven’t had the same kind of harrowing experiences as many other women, I have had my pain dismissed and out right ignored by my doctors. I’d like to share a quick summary of my story.

I was diagnosed with endometriosis in December 2014.

A reader has the gobsmacking story:

My story isn’t one of my pain being ignored, but rather one about a doctor’s lesser familiarity with the female body almost having enormous consequences for my health. When I was 15, I had severe abdominal pain and went to the ER with my mom. After several hours I was diagnosed with appendicitis and brought into surgery for an appendectomy. So far, so routine.

After I came out of surgery, a nurse approached my mom quietly and said, “I really shouldn’t be telling you this, but I think you should know and might want to get your daughter checked out because of something that happened during surgery.”

Apparently, the male surgeon had seen swelling in one of my ovaries while rooting around in my abdominal cavity and thought it was abnormal. Since I have two ovaries, and he was already in there, he announced to the operating room his plan to remove the ovary, without informing me or my parents, since it was an “emergency.”

Another reader shares her story:

I was a generally healthy person until a few weeks before Christmas 2013. I was having strange headaches that would start at the base of my skull and feel as though someone was dumping cold water down my neck. These headaches came and went. I popped Advil daily, but they weren’t debilitating and I was so focused on finishing up my last teaching semester that I put off going to the doctor until January.

On Christmas Day, my husband and I went to go see a movie (our Christmas tradition, since we live away from our families). About two hours into the movie, I felt the right side of my face go numb—I felt as though I couldn’t feel my cheek or move the right side of my mouth. The next thing I know, I was shaking and my entire right side went numb, followed by a tingling feeling.

Something in my mind kicked into overdrive and I immediately turned to my husband and whispered, “Something isn’t right. We need to go. NOW.”

A reader adds another story to the nascent series:

When I was about 16 years old, I passed out when I got home from school. My period had been going on for longer than two weeks, so my mother thought it might be related. She took me to the emergency room. The doctor, a woman, said she thought I was having a complicated pregnancy. I told her that I was a virgin, that I attended an all-girls school, and that I didn’t even know any boys other than my two brothers.

She said I was lying and that teenagers always lie about being virgins. My mother didn’t say anything to refute the doctor, I think because she always thought doctors were right. They agreed that I should have a pelvic exam. I never had one before and I wasn’t too keen to have one either. My mom wasn’t in the room, because they told her to leave. When the doctor started the exam, she roughly jammed her hand in and I started screaming because I was in so much pain. She turned to a nurse in the room, who was holding me down, and coldly said, “I guess she was a virgin.”

On the way home, my mom said she could hear me screaming down the hall. A few weeks later we were sent a bill for $500.

A reader writes:

Yes, it is true that doctors—and not just male doctors, and not just doctors—don’t take women’s pain seriously. I have vulvodynia—the skin of my vagina is so painfully sensitive that even the lightest touch feels like pureed habaneros—and I also have vaginismus—my pelvic floor muscles seize up constantly to prevent penetration. I’ve had vulvodynia and vaginismus as long as I can remember, but it’s been a long, awful road to be taken seriously, much less get diagnosed.

When I was a teenager, my mom took me to the doctor to see if anything could be done for my debilitating menstrual cramps. The doctor gave me a pelvic exam. I didn’t know what a pelvic exam was, so I didn’t know what I was agreeing to, if I agreed to it at all. The doctor stuck her fingers up my vagina and started feeling around, and I was in unimaginable pain—worse pain than the menstrual cramps that were so painful I couldn’t even walk. I was in agony. More than that, I felt violated. I had been raped.  

My mom and the doctor were puzzled that the exam upset me so much. They thought it wasn’t a big deal that it hurt, or that I was upset; they just thought that it was because I’d never had sex before and didn’t know what it felt like. I cried all the way home, all afternoon, and into the evening.  

My mom offered to take me shopping.

This week, Shruti Pinnamaneni and the brilliant team at Reply All did that thing they do so well: they took the slender thread of a story—in this case, a person suffering from a mysterious medley of ailments—and followed that thread to surprising and fascinating places. Hope, the story’s protagonist, tells a gutwrenching tale of going to different doctors for second and third and fifth and eighth opinions, receiving over and over the same diagnosis of anxiety-induced migraines, being prescribed again and again treatments that alleviate none of her pain.

And then, late in the story, there’s a particularly thought-provoking moment. Dr. Lisa Sanders, the Yale University School of Medicine internist whose New York Times column inspired the hit show House, says to Hope, “I bet neither of the primary care doctors you went to see were women.”

When I read Joe Fassler’s brutal account of the time no one believed his wife was having an emergency, I thought of Hope, and Dr. Sanders’s bet. Thousands of people are reading that story as I write, and I suspect these accounts resonate much more widely. Do you have stories like these? Hello@theatlantic.com.