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.
Initially, I laid down on my bed hoping for it to subside enough before I could drive myself to a hospital. The pain only got worse, so I knew that I needed to call an ambulance. It took me to a hospital where they seemed to question my claims that I had insurance because I could not provide them with a card or name or policy number. I had just started my new job that week and had not received that information. I am fairly sure that my lack of insurance information, coupled with my dress (more appropriate for a mid-20s young woman joining friends for a Saturday night out drinking than a hospital) influenced the level of care, or more accurately lack of care that I received at that hospital. I arrived at the hospital around 10 PM.
In an ER exam room, the male nurse went through standard health related questions. Was I pregnant? Not that I knew. Had I ever been pregnant? Yes, once and it was an ectopic pregnancy and I had surgery before my fallopian tube ruptured.
Alone, I did my best to answer questions even though I was in excruciating pain and was becoming disoriented. The nurse wanted to do a pregnancy test (seemed smart), but I was completely incapable of urinating, something that annoyed the male nurse greatly. Meanwhile, I was asking for something—anything—for the pain, which they refused until they could confirm that I was not pregnant.
I was showing signs that I recognized as signs of internal bleeding (shoulder pain, etc), which I also told the ER nurse. Finally, after making me attempt to urinate three times, they decided to insert a catheter. Up until the pregnancy test came back positive, I was sure that I had appendicitis; it seemed like the only thing that made sense.
With a positive pregnancy test, I was certain that I had another ectopic pregnancy, but it became clear that neither the doctor nor the nurse shared my concern. At this point, I had been at the hospital for a few hours and it was past midnight. Any slight movement was painful. The ER physician came in to talk to me, and made it clear they would not give me any drugs that would harm the “baby.”
I quickly got the impression that I was being treated like a “drug-seeker.” I told the doctor, again, that I had an ectopic pregnancy before. I knew the symptoms of a ruptured ectopic pregnancy because of my first one about six years before. I pointed out to the ER physician that my shoulder pain was a sign of internal bleeding because of blood pooling in my abdomen. The ER physician disagreed and was pretty sure that I just had an ovarian cyst rupture, but that it was not serious.
I made it clear that if the pregnancy was viable (although I was certain that it was not) that I had no intentions of remaining pregnant. I begged for some sort of pain relief, which they gave me sometime between 1:00 and 6:00 AM. I asked for an ultrasound, but I was told that they did not have anyone on staff at that time at night on Saturday.
Sometime before 6:00 AM, the nurse informed me that I needed to leave since they were not going to admit me. I either needed to have someone pick me up or they would call me a cab. At this point I was incapable of arguing or doing much of anything. I called my older brother, who came to pick me up. The doctor explained that I likely had a cyst rupture. He wrote a prescription for pain medication and told my brother that I should probably eat something. When I left, the jeans that I came in would no longer button or zip up because my abdomen had swollen so much during the eight hours I was at the hospital.
My older brother dropped me off at home. Although he did not think I looked well, he trusted that the doctors knew what they were talking about. In my apartment, alone, I laid in my bed and drifted in and out of consciousness, only to wake enough occasionally to vomit. My mother, who lived out of state, called about every hour, but she became worried as I became less coherent. At some point my mother called my younger brother and asked that he take me to a different hospital.
Around 3:00 PM that Sunday, my younger brother rushed me to a different hospital. As soon as the people working in admitting saw my condition, I was quickly rushed into a room and I tried to give them details about my condition starting from the night before. Within a matter of 15 minutes, I was getting an ultrasound, and they immediately began prepping me for surgery while wheeling me to the operating room. The last words I heard right before the anesthesia took effect was the anesthesiologist telling me “honey, you are going to feel so much better when you wake up.”
I required multiple blood transfusions during surgery and I was about as close to dead as you can be and still recover. In fact, with as much blood as I lost, I really should not have survived. As painful as surgery is, the anesthesiologist was right; I woke up just over 24 hours after my fallopian tube ruptured feeling so relieved that I was not in pain like I was before.
An ectopic pregnancy occurs when a fertilized egg implants outside of the uterus, most commonly in the fallopian tube. The fertilized egg will continue to develop, eventually threatening the structure that it is attached to, particularly the fallopian tube. A ruptured ectopic pregnancy is a medical emergency. It is also one of the most common pregnancy complications. A woman who has had one ectopic pregnancy is much more likely to have another ectopic pregnancy.
You do not have to be an MD to know that if a pregnant woman presents at the ER with a sudden onset of extreme pain, with abdominal swelling and shoulder pain, you do not send her home without at least doing an ultrasound.
My employer was amazing, and my insurance covered my medical costs. Once I was home and recovering, I became increasingly furious. I decided to file a complaint with the Missouri Board of Healing Arts. I wrote a letter, very similar to what I described here, and I mailed it to BHA. I also sent a copy to the CEO of the first hospital. I included a cover letter saying that if I was a CEO of a company that is about to be the subject of a complaint to a regulating agency of my business, that I would want to know and I would want to find out what happened as soon as possible.
I received a carefully worded letter from the CEO’s office apologizing that my condition changed after I left their hospital (which is not true—my tube ruptured before I arrived there by ambulance). Eventually, the complaint proceeded and I met with an investigator for Board of Health Arts. The investigator followed up with me later and told me that although she could not give me the specifics, considerable changes were made at the hospital and those directives came from the top of the organization as the result of my letter to the CEO.
I have never really been satisfied with the conclusion. At the time I did speak with attorneys and I received exactly the same response that I just heard Joe discuss on NPR. I was told that unless I could prove irreparable harm, there was not much that could be done. Apparently, almost dying is not enough, but if I had died, my family would have had one heck of a case.