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First Drafts, Conversations, 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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When 'Symptom Googling' Hits a Better Diagnosis

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.