Karina Wagenpfeil, a writer and scientist, first brought the issue to the internet’s attention when she tweeted photos of a problematic practice question for a medical licensing exam.
Grey’s Anatomy fans will no doubt recall the episode where Miranda Bailey (Chandra Wilson) – a talented and adept surgeon, with a wealth of medical expertise and knowledge – realised that she was having a heart attack.
However, when she visited her local emergency room and listed off her symptoms, doctors dismissed her as being merely anxious – a decision which almost led to the character’s death.
It is no secret that Grey’s writer Elisabeth Finch drew on her own experience with misdiagnosis for Bailey’s storyline. Both incidents, though, point to a persistent, often overlooked problem in medicine: women’s symptoms are often diminished and dismissed by doctors.
And, earlier this week, this issue was underlined when Karina Wagenpfeil tweeted photos of a practice exam question from Medscape.
In the multiple choice question, medical students are asked to choose a diagnosis for a woman who goes to the hospital for physical pain not detected by various lab tests.
The “correct” answer to the question is Munchausen syndrome, a mental disorder characterised by deliberate acts to seem ill to receive attention. Other options are somatisation disorder, conversion disorder, hypochondriasis, and malingering — none of which, Wagenpfeil points out, are physical disorders.
“Very disappointed by Medscape’s USMLE practice question of the week,” the scientist wrote on Twitter, alongside her screengrabs of the question.
“[Students are] asked to diagnose woman with unexplained pain and they don’t even give a physical disorder as an option. Their ‘correct’ answer = Munchausen Syndrome.”
Frustration all too clear, Wagenpfeil added: “This is the bulls**t we’re teaching our doctors?!”
Very disappointed by Medscape's USMLE practice question of the week. Asked to diagnose woman with unexplained pain and they don't even give a physical disorder as an option. Their 'correct' answer = Munchausen Syndrome. This is the bullshit we're teaching our docs?! pic.twitter.com/AeJWbP3lSj— Karina Wagenpfeil (@ChronicKarina) July 25, 2018
In a follow-up tweet, Wagenpfeil said Munchausen syndrome, an outdated term for “factitious disorder imposed on self,” is considered rare. A woman with undiagnosed pain, however, is not rare.
Indeed, there are many conditions that cause pain but are difficult to diagnose, she continued.
“There are numerous conditions that cause pain but are difficult to diagnose and don’t show up on anything but the most specialised testing, if at all,” she said.
“A CBC does not show all, people!”
Munchausen Syndrome is considered rare, but the case of a woman with unexplained pain is anything but. There are numerous conditions that cause pain but are difficult to dx & don't show up on anything but the most specialized testing, if at all. A cbc does not show all, people!— Karina Wagenpfeil (@ChronicKarina) July 25, 2018
Wagenpfeil went on to list off just a few of the undetected conditions that could cause chronic pain, such as “autoimmune diseases, mast cell activation disorders, Ehlers-Danlos Syndrome [and] Myalgic Encephalomyelitis”.
And, noting that the practice question casts suspicion on the patient for being “quick to suggest treatment options and listens intently whenever any medical professionals are in the room,” Wagenpfeil adds: “Getting educated and trying to get better by suggesting treatment options when you have been suffering for months (in real life, oftentimes years) and given no treatment options from your doctors is a perfectly rational response the situation.”
Getting educated and trying to get better by suggesting treatment options when you have been suffering for months (in real life, oftentimes years) and given no treatment options from your doctors is a perfectly rational response the situation— Karina Wagenpfeil (@ChronicKarina) July 25, 2018
Finally, in a bid to vent her frustrations once and for all, Wagenpfeil lambasted the ridiculousness of citing Munchausen Syndrome as the cause of a woman’s pain.
“WebMD lists ‘fevers’ as a possible presentation of Munchausens Syndrome,” she noted. “How in the fresh hell does someone voluntarily conjure up a fever?
“This is such utter baloney. I just can’t. Nope. Bye.”
Also, WebMD lists fevers as a possible presentation of Munchausens Syndrome. How in the fresh hell does someone voluntarily conjure up a fever? This is such utter baloney. I just can't. Nope. Bye.— Karina Wagenpfeil (@ChronicKarina) July 25, 2018
Since Wagenpfeil’s tweet went viral, countless other women have come forward to share their own stories of dismissal by their doctors.
Hahah yup, my celiac disease, Ehlers-Danlos syndrome, and bipolar disorder allll went undiagnosed until I was like 29-30.— Ruggy (@Ruggafluff) July 26, 2018
Lotta years of a lotta doctors assuming it was all in my head.
My MIL had nothing show up for 6 mths and then suddenly stage four GBM in a MRI. She's was a nurse and knew there was something there when everyone else said it was stress. She didn't take no for an answer and requested tests etc.— Keira (@ladytimeoin) July 26, 2018
So frustrating. I had a CT scan diagnosis of “probable adenomyosis” and the ER doctor still said, “of course her lining is thick she’s 35.” Had my hysterectomy three years later and yep, there was the adenomyosis (and fibroids, and endometriosis).— some call me susan (@susalooo) July 26, 2018
My hypothyroidism was put down to 'stress'. It wasn't stress, it was hashimotos. It's so frustrating— Sadie Mitchell (@sadiedmitchell) July 26, 2018
I have two painful circulatory disorders that do not show up except by difficult and expensive genetic or obscure lab results directed by a hematologist. As an athlete I am well-versed in stopgap treatment measures. My untreated “hypochondria” eventually resulted in strokes.— Jennifer Goodland (@BigYearColo) July 26, 2018
“This is terrifying and explains a lot if this is the standard of care,” said one, adding: “I wonder what the diagnosis would be if this began with ‘a 36-year-old man’?”
It is a problem that seemingly impacts women of any status: earlier this year, Serena Williams explained that, while she was recovering from her emergency C-section, she suddenly felt short of breath. Because of her history of blood clots, and because she was off her daily anticoagulant regimen due to the recent surgery, she immediately assumed she was having another pulmonary embolism.
However, despite reportedly telling hospital staff what she thought was happening, she was informed that her pain medicine “might be making her confused”. And, instead of giving her the CT scan and blood thinner she repeatedly requested, doctors reportedly ignored her requests and gave her an ultrasound, which revealed nothing.
“I was like, a Doppler? I told you, I need a CT scan and a heparin drip,” she recalled.
Finally, she was given the scan, which revealed a number of small blood clots in her lungs – exactly as the tennis star had suspected.
“I was like, listen to Dr. Williams!” she says.
The pulmonary embolism caused Williams to suffer a number of intense coughing spells, one of which was so violent that it popped her fresh C-section wound open – and she was forced to spend the “first six weeks of motherhood unable to get out of bed”.
It is also worth noting that this is not an issue which is unique to the US healthcare system (Medcare is based in America), In fact, a 51-page report by MPs has indicated that thousands of women in the UK suffering from endometriosis or fibroids feel dismissed, ignored and unable to access information and specialised treatment.
With 40% of women saying they had seen a doctor 10 times before being referred to a gynaecologist and 67% saying they obtained most of their information on the subject from the internet, the findings from the All Party Parliamentary Group on Women’s Health revealed a lack of awareness around what is considered ‘normal’ menstruation and what indicates a more serious issue.
And of the 2,600 women interviewed, many reported similar experiences when it came to having their symptoms taken seriously – 42% said they did not feel they had been treated with “dignity and respect” by doctors.
MP Paula Sherriff, chair of the group, said she was “shocked” by some of the stories.
“If women cannot even get the right diagnosis and information about treatments, how can they possibly decide what is the best care for themselves?” she said.
“Women deserve every opportunity to take control of their own healthcare and this group is striving to empower women so they have this potential.
“The statistics in this report show that women are all too often dismissed by healthcare professionals when discussing their symptoms and choices. The fact that almost 50% of women did not feel that they were treated with dignity and respect is appalling.”
We sincerely apologize for this situation: It perpetuates medical misogyny, a huge problem women face when seeking treatment from medical professionals. The question has been removed, and we will be conducting a content review. See our full statement here. pic.twitter.com/hz8FXwRjoB— Osmosis (@OsmoseIt) July 26, 2018
After spotting Wagenpfeil’s tweet in their newsfeed, Medscape contacted Osmosis, the publisher of the exam, in a bid to make them aware of the issue.
Since then, the company has released a statement of regret, saying: “We sincerely apologise for this situation.”
The statement goes on to acknowledge that questions such as these perpetuate “medical misogyny, a huge problem women face when seeking treatment from medical professionals”.
“The question has been removed, and we will be conducting a content review,” they added.
It is, we suppose, a good start. However, we can only hope that this story will help to highlight this issue further and bring about a much-needed reformation of the healthcare system.