Stories of Misunderstanding Women's Pain, Cont'd

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

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 week later I was back in the hospital with the same pain, which was completely ignored and brushed off, and I was given ibuprofen. Another week went by before I was finally given an abdomen ultrasound, in a different ER, where my extremely diseased gallbladder was found out and I was sent to surgery.

Since that experience, I have heard So Many Stories about gallbladder issues with pregnant or postpartum women, and they all tell the same story about being ignored.

I also have chronic pancreatitis, which is the absolute worst pain I have ever experienced in my life—worse than child birth, worse than the gallbladder. I later came to understand that your pancreas is basically DIGESTING ITSELF and that’s why it hurts so bad. My doctor told me that the pain was a stomach bug and sent me home. After a friend found me unconscious, laying in a pile of my own vomit and diarrhea, an ambulance took me to the ER where I waited for hours to be seen. Apparently they also thought I just had the bug going around. Later I found out that I was lucky to have stayed alive, that my body had gone into shock and other organs (my liver, for one) were beginning to show signs of disease.

I’ve had pancreatitis four times in three years and the ER story is pretty much the same every time.

Last but not least, I have hypokalemia, which is chronically low potassium levels. Potassium is vital, since it’s what keeps your muscles functioning, including your heart. When I collapsed on campus in college, unable to make my leg muscles keep working, I was taken to the wellness clinic. My blood pressure couldn’t be taken; several people tried. An ambulance arrived and the ECG showed that my heart was in serious distress, but the (male) EMT kept insisting that I was fine and I just needed to calm down. I was in and out of consciousness, so I don’t see how I could have been acting anything BUT calm.

They reluctantly took me to an ER, where I was again ignored for around six hours, still in and out of consciousness. When I woke up well enough, I called a cab and went home. But I followed up with a (female) cardiologist because I remembered the EMTs arguing about my abnormal ECG. Turns out I have a heart defect that is exacerbated by my low potassium levels.

I had to spend two weeks from the ER day until my cardiologist appointment living like a rag doll, feeling extremely weak, always shaking or trembling, with extreme headaches. But I knew that I must be “fine” because everyone kept telling me that I am.

I’ve had (male) doctors suggest that my pain is just stress, and one asked “Do you have a strong man at home that can give you a massage?” He said all I needed was a bubble bath and a good rub down.

I hate having to go to a doctor’s appointment. I’m always filled with shame and anxiety for two or three days before the appointment.

Our second reader, Ruth, suffered from extreme dysmenorrhea, or painful menstruation:

I was 30 years old before I heard a gynaecologist finally admit that the pain I experienced each month for 18 years was not psychosomatic. It was another five years before another M.D. prescribed an anti-inflammatory that, unlike the useless codeine and morphine I had tried earlier, actually reduced the pain, somewhat. I cried when I thanked him for caring enough to help me.

When I developed gallstones in my forties, the attacks weren’t so different from the dysmenorrhea I was accustomed to. I would experience nausea, cramps, and vomiting after which I fell into exhausted sleep. I even tried to convince the skeptical surgeon I didn’t need to have my gallbladder removed because I was used to the pain and could live it as I lived with dysmenorrhea pain. Unlike my female friends, I celebrated achieving menopause because I looked forward to all pain-free days.

When I reflect back on 40 years of medical officials mostly dismissing my dysmenorrhea as imaginary, I should be more upset than I am.

But I am not surprised, as I know a bit about the history of medical beliefs. At university in the 1970s, I was taught that autism and homosexuality were due to poor parenting. I was taught that 90 percent of human braincells were superfluous. I read that in Vienna in the 1840s, Dr. Semmelweis reduced childbed fever with hand-washing but was dismissed by his peers and died from violence in a mental asylum in his 40s. Only in the last few years has fecal bacteriotherapy stopped being regarded as crackpot by mainstream medicine because it has been shown to cure C. difficile. Now, leeches are again being used post-surgically to save tissue.

In contrast to these and similar examples of medical orthodox beliefs, I believe I got off easy with dysmenorrhea. I didn’t die from it, I only howled and moaned for hours each month. Once the pain ceased for that month, the sense of relief I felt approached happiness, similar I guess to a prisoner being removed from the torture chamber and returned to his cell.

I believe that dysmenorrhea will probably never be properly addressed because there is no money to be made by drug companies in it and no one treating it will win accolades for saving human life.

Here’s a third story from a female reader, whose November email I just found in our archives:

I read the thread posted in Notes nodding my head and at times swearing out loud because it’s all so. damn. relatable to me.  

In January 2015, I had recently finished my undergrad degree and thought I had put on some weight as a result of too many all-nighters/bad diet/alcohol—the typical uni student curse. In my graduation photos I look five months pregnant, no joke. What I couldn’t explain was why I had to use the bathroom every hour and was suffering awful pain if I had to “hold it” for too long. So naturally I went to the doctor.

She initially dismissed me (and I think it’s really important here to not assume that it’s just male doctors, but the medical profession in general, who are dismissing women) as “having put on weight.” When I pushed the point/refused to leave the clinic, she suggested no less than three times that maybe I was pregnant, despite my responding in the negative. After a pregnancy test which I consented to do simply to make her shut up, she finally referred me for an ultrasound. Even the ultrasound was misread, and every doctor I spoke to talked about a mass on my right ovary and talked over me when I insisted that it was sitting on the left.

My eventual diagnosis? Stage 1C ovarian cancer.

I underwent a surgery that left me with a scar stretching from pubic bone to an inch above my navel, nine weeks of chemotherapy, and now have five years of ongoing blood tests and scans to look forward to—assuming that all continues well.

Ovarian cancer is uncommon in young women, yes, but it’s not unheard of, and I shudder to think what would have happened if I had nodded blithely and agreed that yes, maybe I had just put on weight. I was lucky—it feels ridiculous to say but it’s true—I was so lucky that I trusted myself enough to know that I wasn’t just being “dramatic,” that something was really wrong, and I was lucky that my mother is 1) a nurse and 2) trusted me enough to back me up all the way.

Anyway, thank you for having this conversation and for providing women with a platform to speak about it other than our individual blogs! On our own we are shouted down and ignored so often. It’s terrifying that it is 2015 and women’s health is still such a ~terrifying unknown~.