Do you ever look back on a time in your life and think “Holy crap. Did that really happen?” That’s been me all day today.
On Thursday of last week, I woke up pretty uncomfortable and it quickly escalated to excruciating pain that landed me in the ER for six hours that day. It’ll be easier to just have you read what Wil wrote on that than for me to explain it, if you haven’t already done so. I was misdiagnosed by the male doctor in the ER on Thursday because he completely missed my issue on the CT scan. He acknowledged seeing a cyst on my left ovary, but since my pain was on the right, that cyst wasn’t the cause of my problem. He decided I had a kidney stone because I had complained about pain up the right side of my torso, even though no stone was visible on the scan, and my blood and urine tests also did not show that to be the case. “I’ve had big guys, football players even, come in reacting this same way. It’s a kidney stone. Probably a small one stuck in the valve trying to leave your kidney. It should pass in a few days. But also, sometimes people can just have abdominal pain for no reason. Anyway, come back if it gets worse, but see your regular doctor sometime in the next three days as a follow-up.” I went to my internist on Friday (for only the second time ever since becoming my doctor because my doctor for the past 21 years recently retired. And no, I will not be going back to this guy either, for reasons.) I ended up back in the ER on Friday night, where I got a proper diagnosis and then emergency surgery early Saturday morning, which Wil also wrote about so I won’t elaborate on that part either.
At the end of my stay in the ER on Thursday, a woman came in to collect the $100 emergency room deductible for my health insurance. As Wil was paying her, I thought back to all the things done to me–the multiple doses of morphine, blood tests, anti-inflammatories, anti-nausea medication, checking blood pressure, pulse, and temperature, urine sample, CT scan, prescription for narcotic pain pills, and occupying space in the hospital, and I was so grateful to have good health insurance that covers most of it. I couldn’t imagine going through all this and then have the fear of not being able to pay the bill because of not having health insurance. Or not even going to see a doctor at all because you can’t pay the bill, which is a real concern for millions of Americans.
The next day, I went to my regular doctor because the pain was worse. This doctor looked over all of my medical records from the hospital the night before as well as reviewing the CT scan I’d gotten while there, without comment. He stared blankly at me as I described what had happened, all while the pain in my gut worsened. He had me lay back, listened to my heart with his stethoscope, pushed on my gut in a couple of places, which sent shooting pain throughout my body, and handed me prescriptions for everything from pills made specifically for constipation due to narcotic pain meds (because our nation is so overloaded on opioids that medication to counteract them was invented. Great.) to a medication he described as “something we usually give male patients to open their urethra to release the stone, so maybe it’ll help you” to yet another prescription for opioids. Wil went to the pharmacy to fill them all, fortunately only having to cover a small co-pay for each and not the full price. Again, it made me think of the out-of-pocket expense that people without insurance endure, and I was grateful for the coverage. I took them all as prescribed, but none of them worked.
Wil had to rush me back to the ER Friday night at 2:30am because I was screaming in pain. I’d been trying to “ride it out” until this so-called stone passed, but something was seriously wrong. I kept screaming “I feel like one of my organs is shutting down!” as I walked hunched over out to the car, and writhed in pain on the short ride to the hospital. Once in a wheelchair, and finally into a room, a female doctor came in to see me. I explained to her my diagnosis of a kidney stone the day before, and how I thought maybe all of the pain across my pelvic region was constipation due to the narcotic pain meds prescribed to me. She seemed unsure about that, so she pushed on my abdomen and released her hand quickly, which made me scream louder than any pain I’d experienced during the birth of my two children. “This isn’t right” she said, apologizing to me for the pain and assuring me she’d figure out what was going on. She left the room to look at my CT scan, and came back in to tell us there’s a visible cyst on my left ovary that’s just over 2 cm big (which the ER doctor mentioned the night before) but the right side is black and you can see a shadow of something that’s clearly more than 5cm big. She looked frustrated that this was overlooked by the male doctor who saw me on my first visit there, and sent me off to get an ultrasound.
I’ll spare you the gory details of the ultrasound but let’s just say it is possible to go from zero to launching yourself 2 feet straight up a gurney in half a second from pain.
The ER doctor came back in to see me after my ultrasound. She said the CT scan from the night before showed a cyst measuring 6.4cm on my right ovary. The ultrasound shows darkness around the ovary now, which is a sign that the fluid-filled cyst just ruptured, and there’s something called an “ovary torsion.” The ultrasound, which can detect blood flow, confirmed that the blood flow had been cut-off as a result of this twist. The ovary was dead. It had to be removed as soon as possible because a dead organ can cause severe sepsis, which can kill me if it’s left inside. She said they called in an OB/GYN surgeon and she was on her way in to do the surgery within the hour.
I was shocked.
How the fuck do you miss something like that? It was right there on the CT scan all along, and both male doctors didn’t think to look there.
I’ve been home since Saturday evening, resting, and relieved to finally be free of that pain. On Monday morning, still weak from all the trauma my body went through, I stepped into my shower because boy, did I feel gross. I got in and I put my head down, allowing the warm water to ease the aching muscles in my neck and down my back. Everything was sore from the hours, the days, of clenching my whole body almost to a point of rigid spasms from the pain that I experienced. I looked down at my arms, both laced with needle marks from two separate ER visits. Old medical tape adhesive on either side of those puncture marks, one arm with more adhesive than the other from taping tubes to my arm before surgery. Too weak to scrub any of it off, I glance down at my side, which is also covered in squares of old adhesive from the EKG they had to do to make sure my heart could handle the surgery. I look down at my abdomen, swollen and bruised from the from the four incisions it was given, ranging in size from one to three inches long. I marvel at modern medicine advances that allow these incisions to close up by using superglue instead of sutures. And then I start sobbing uncontrollably.
I cried for the terror my husband endured at seeing me in so much pain. How relieved I am that we chose to go back because something clearly wasn’t right, even though a medical professional–TWO medical professionals– told me it would pass because it was just a kidney stone, when what I actually had could have killed me. I think of the unbearable grief my children and my husband would have experienced if I had died as a result of this negligence . All of it preventable, if these doctors had just taken the time to figure out why there was darkness where there should have been an ovary, instead of deciding I had something that no tests had confirmed.
I’ve received thousands of messages on social media and several emails from people who have been extremely supportive, and I am very grateful for that. But what really stands out is how many women have told me they have also been misdiagnosed by a male physician in an emergency situation with something specific to the female body. Several had the same ovary torsion where the doctor thought it was a kidney or appendix issue, one whose mother died because the ER doctor diagnosed her pain as gall stones, when it was actually ovarian cancer. Many with postpartum illnesses or infections that the male doctor in the ER either dismissed or seemed uninformed about and therefore, misdiagnosed treatment for. This is unacceptable.
Experiencing a female specific health crisis that a male doctor is not trained to look for, and then hearing how often it happens to others, makes me feel like more advocacy needs to be done to insure there are educated doctors on staff at all times in emergency rooms. I know there are excellent male doctors out there. The one I had who retired was great, and I’m not sure I’ll ever find one as knowledgeable about the male AND female body as he was. The male OB/GYN I’ve seen for over a decade is part of a group of 4 doctors, where they all pride themselves on being up on the latest technology and medical research for females. The negligence so many of us women have experienced doesn’t need to be this way, yet hospitals seem to be allowing it, and that needs to change.
I have yet to see my medical bills but I know they’re going to be way up there, even with my health insurance covering 90% of it. When I think of women who constantly get misdiagnosed and have to endure that expense, or don’t even see a doctor because they don’t have health insurance, it makes me so upset and angry that our country does not provide universal health care coverage. And when our government keeps taking away federal funding for health care centers that focus on the medical needs of women, it’s even more upsetting that as half of the nation’s population, we are treated as disposable people. This isn’t right, and something needs to be done about it. I’m not sure how, but I will find a way to help make it right. I will keep you posted.
So this provoked some feels.
I’m an attorney here in the U.S., and my best friend in the world has endometriosis. She started having ovarian cysts, including one that went gangrenous and almost cost her her entire reproductive system, at age 14. She just got a hysterectomy last year, at age 35.
Just think about that. Twenty years of suffering and sexism and disability and pain; twenty years of not being believed, of putting up with paternalist bullshit with a polite smile. I’ve been in the room to watch the doctors and nurses accuse her of “drug seeking” – because you wouldn’t if you were in this much pain? – and of “just wanting attention.” I’ve heard her called “the [homophobic slur] with Munchausen’s in Rm 4” and “the fat bitch who got brought in by ambulance.” (Because being female isn’t enough; she’s also a POC, fat and poor! It’s like the bigotry quadfecta!) Medical professionals get burnt out, sure; that is not an excuse for ceasing to understand that the patient in front of them is suffering. We’re both scarred from something like seven years of late night ER visits and nights watching her sob and beg for death. Aren’t medical facilities meant to reduce trauma, not augment it?
I don’t know. Wil’s writings made me sob uncontrollably, because while we aren’t married, my best friend and I go together, and even if someone isn’t one part of a whole, they should never have to go through that kind of terror. I’m so relieved on your behalf that your story ended well, but I’m impressed, and dare I say grateful, that you want to help the people with uteri (trans men have uteri, after all, and I imagine it’s even worse for them!) who aren’t so lucky.
For my part, I’ve been working on a law review article for a while now about medical malpractice. Legally speaking, medical malpractice is defined, at least in my state, as “any instance in which a medical professional abrogates from an accepted duty or standard of care.” I just have to find a way to ask “Well, what if the ‘standard of care’ is misogynist horseshit from the beginning?” that doesn’t involve profanity. Might be difficult.
Rest well, and my best to your family.
I am so sorry for what Anne Wheaton and other women have gone through. I went to my local ER (on 12/28/2016) with excruciating pain on my right side. I was given hydromorphone dilaudid for the pain. After I had several tests that the ER doctor had ordered, he told us that I had a large mass (approx. 13 cm) that appeared to be ovarian in nature. I was then admitted to the hospital. The next morning, an OB/GYN told my husband and me that I had a large complex ovarian mass (with torsion). Since I was postmenopausal, and the mass was complex, she thought that it might be malignant (which thank God, it wasn’t). She wanted to transfer me to a hospital about an hour away (because she felt they were better equipped to handle my surgery). When she spoke to the surgeon down there, he agreed to have me transferred down as his patient. Since we were having a snowstorm that day, he wanted me to come down the following morning, so I was sent down, via ambulance, the next morning. When the surgeon came into my room, he told my husband and me that he had no idea that I was coming. He said that he did not believe that I had an ovarian torsion; I don’t even know if he looked at my medical records from the hospital that transferred me down there. He never examined me. He informed us (with his pompous attitude) that he was not going to do my surgery that day. As a matter of fact, he did not plan to do my surgery for at least the next 4 days because his office would be closed for the holidays! He told us that he would be sending me home the following day (and he told my husband to call his office (when they re-opened) to set up an appointment for me. My husband and I were worried that my ovary might rupture, since I hadn’t had the surgery, but he said that very rarely happens. My husband called his office 4 days later, and luckily, his office set up an appointment for me with a different surgeon in the office. My appointment was for the early the next morning. At my appointment, the surgeon examined me, and he said that he wanted me to go back to the hospital that afternoon to prepare me for surgery the following day. He noted on my record that I was acutely ill. When I had surgery the following evening, I obviously had ovarian necrosis. I was hemorrhaging, and I had, what I think, was peritonitis. I had to have my right ovary, my right and left fallopian tubes, my cervix, and my uterus removed, followed by 8 weeks of healing. I have been trying to find an attorney for medical negligence, but I have been turned down by 3 different law firms because I don’t have a permanent disability from it. How can he not be found negligent? He had my diagnosis right in front of him, and he decided to ignore the emergency surgery that I needed! Are his actions considered intentional doctor abandonment? Am I entitled to punitive damages since he dismissed me because he wanted to have time off for the holidays, even though he knew the dangers of leaving an ovarian torsion untreated? Thank you for any advice you can give me.
Oh my goodness, yes! It is so comforting to read someone else’s story.
Here’s my story:
About 5 months pregnant, I was working at Costco and all of a sudden I felt super sick, nauseous, dizzy, etc. I went to the bathroom and knew I needed to go home. I told my supervisor and headed out. I called my husband on the way home and he asked if I wanted him to come pick me up. I said no, I should make it the 5 miles home. Well 2 minutes after calling him, I had to pull over in a Walgreens to vomit in their bushes (sorry, Walgreens). I called my husband and he came and got me as fast as he could. We rushed over to the ER where we just sat, waiting, to be seen. I’m sure they saw I was pregnant and thought it was a pregnancy related pain. Finally got saw by a doctor and they didn’t really perform any tests or exams. They told me that a lot of pregnant women have right ligament pain and that it would go away. Okay, fine. Not happy with that diagnosis but I didn’t know any different. Now looking back, I wish they did more. Eventually the pain subsided.
Fast forward about 5 months, 2 weeks after giving birth to our daughter, I began throwing up in the middle of the night and having unbelievable pain in my right side and my back. We rushed to the ER once again with our 2 week old (made me nervous having a newborn in the ER). They slowly did some tests and said it was likely kidney stones. I laid there in horrible pain. Finally, they decided to do an ultrasound. And viola, a cyst was twist my ovary. Here’s the worst part: they said to go home and that my OB would call me later with what to do. I was in so much pain! I could not stand, lay, sit without excruciating pain shooting through my whole body. My OB called and said the soonest they could get me in for surgery was 2 weeks from now. I thought “are you kidding me, I can’t even move!” I laid on our couch, trying not to move a muscle for 3 days straight. Finally the pain started to subside (because it had finally killed my ovary).
2 weeks later I go into surgery, and sure enough they find a mammoth cyst (10cm x 8cm x 3.5cm). It was so crazy my OB had to take a picture. She showed my husband and I’m sure he’ll never be able to erase that from his memory. The misdiagnosis 6 months early cost me my right ovary & tube.
Thanks so much for sharing your story!
I had a blown tubal pregnancy way back in the 1970s like all of u I was told that I was ok. But after passing the giant clot my pressure was way down. This was before ultra sounds and C.T. scans. I had to go back to the E. R. At that time I was in really bad shape. I almost died I was in so much pain I was screaming. I had the shakes because my body went into shock. Like others out there i was misdiagnosed . I am sad that the doctors still get it wrong because they have a ego.
I has such a similar experience…..started on a Monday morning and finally had surgery overnight into Thursday. two mris, two ultrasounds, two internal ultrasounds, two er visits. Ridiculous. Unfortunately, my insurance wasn’t as good…..got stuck with over 5k in bills. Tried fighting with the hospital since I was sent home and issue not resolved. Of course, got me nowhere. I’m in shock reading this article…they first thought I had appendicitis……kept me for observation and still sent me home in pain. What a nightmare it was. 🙁
So sorry to hear about your pain and suffering, and glad you are recovering. I do have an issue with one of your comments.
“Experiencing a female specific health crisis that a male doctor is not trained to look for”
As a male ER doc, I don’t really understand your comment. We are not trained male vs. female. Male doctors take the same classes, do the same rotations in medical school and residency, and care for the same patients in the ED as our female colleagues. To suggest that you experienced this awful occurrence because you saw 2 male doctors is off base, in my opinion.
I know all medical students learn about male and female anatomy in school. What I am referring to is taking a moment to stop in the event of a health emergency and realize a woman’s body is very different from a man’s body. My pain was wrongfully compared to “big guys, football players” when those guys do not have an ovary that could cause this kind of pain. All hospitals should have protocol with their doctors to insure women’s health issues are treated as their own thing because our symptoms and some of our organs are not the same as mens. As an ER doctor, I hope you keep this in mind every time you treat a female patient!
Four years of medical school at a prestigious university known to be one of the hardest. We came out at resident level before residency. OBGYN was about pregnancy and STDs. Almost no course material on endometriosis or life threatening ovarian cysts.
However, my male attending did send women with myocardial infarctions home with anxiety meds. Preventable suffering and deaths.
It has been that way for a while, now its worse.
I really wish that instead of taking issue with the comment you heart and mind would be awakened by the overwhelming stories of the experiences women have as patients where the care providers fail. By taking exception to the comment first you accidentally can lead yourself to being one of the many medical professionals that dismiss women’s pain and assume (incorrectly!) that we are overestimating our pain or that just because women have better pain thresholds that we will be all right.
I am 2 years overdue for GYN exams because I am not taken seriously as a patient. My symptoms, had the male GYN not dismissed my concerns without even letting me finish the sentence, would have saved me a year of thyroid medicine adjustment because they were all hypothyroid symptoms. But instead of hearing me out and pausing to think, I was interrupted and ignored.
No, it’s not “Nothing and normal” to have green nipple leakage, especially when you didn’t/don’t breastfeed.
And that’s a teeny tiny example of the dismissal of things that have caused me, and I’m only one person, unnecessary medical pain and harm.
I get that you feel the statement is unfairly sexist, but the way women are undertreated and undertreated by the medical professionals AS A WHOLE is a sexist problem at it’s core so being offended foremost instead of being disturbed about a common ill occurrence in your profession doesn’t inspire hope… because if you’re insisting that the training is great and even then we’re left with the idea that medical professionals aren’t going to improve if their training improved and WE NEED THINGS TO IMPROVE.
You are right to ask, how do obvious signs and symptoms get missed. I have been there, same pain, mine was due to endometriosis, but misdiagnosed as a cyst or tumor, which it wasn’t. Had several other conditions totally misdiagnosed, one gallbladder the other thyroid. 2 years I have gone through debilitating symptoms that were obviously caused by thyroid, but likely Hashimotos. OB never checked. Caught 2 years later by PCP but just hypothyroid. Going on 3 years and I begged for a Free T3 because some of the symptoms were still lingering. Finally just had it and guess what, Free T3 levels are not good. We know our bodies and the threshold of pain, and our voices as women need to be heard not dismissed. I think your story will help a lot of people, but sadly not sure if the medical industry will care so much. I certainly will be sharing your story.
The SAME THING happened to me!!
When I was 18, I woke up in the middle of the night with pain in my right side. I thought I had a UTI, because it kept feeling like I needed to pee, but very little would ever come out. The pain continued to get worse, and by the morning my mother decided to take me to the ER. My GP was the one of duty, and had X-Rays taken. I was sent home because I did not have any fever, even though I couldn’t walk except by being bent over at a right angle. He scheduled us to see him at his office in a few hours to go over the results.
As we viewed the X-Ray with him, he pointed out what looked like a large bubble in my abdomen. “Looks like it’s just gas,” he said. I looked at him like he lost his damn mind. “It’s not gas,” I said, “Gas doesn’t hurt like this.” “Gas can be very painful,” he continued. “IT’S NOT GAS! I can’t even stand up straight,” I said, as I looked up at him with a twisted neck. He apparently did not appreciate my insistence against his diagnosis. “Listen, there’s not really anything else that I can do here. Go home, hopefully it will pass. If you get a fever, go to another ER and see what they can do.”
Fast forward 8 hours, after I’ve thrown up what little I was able to eat, as well as what I could tell were about 10 undigested ibuprofen that I had taken. I had been taking 4 every two hours to try and dull the pain. Finally, I got a fever, and my mother drove me 35 minutes away to the second closest ER. I remember the receiving nurse asking me on a scale of 1 to 10 how bad the pain was, and her look of incredulous at my answer of 10. It was crowded when I finally got taken to the back. I laid on a stretcher in the hallway until a room opened up, and they graciously gave me priority. A CT scan and more X-Rays were taken, but we had to wait for an OBGYN to come on duty at the ER before getting the results. At about 10pm, he walked in, looked at the scans, felt my abdomen, did an exam, and said, “You’re getting surgery. The CT scan shows a massive tumor on one of your ovaries, and we’re afraid it’s about to burst.” My mother was terrified, but all I could feel was relief that somebody believed me and that they would be taking the pain away. Less than an hour later I was under.
They removed a softball sized tumor that had started as a cyst on my ovary. It had become so heavy that it had caused the ovarian torsion. The tumor, ovary, and fallopian tube were removed. The OBGYN said I would make a full recovery, that they had gotten to it just in time. Another few more hours is all that it would have lasted, and then we would have been dealing with septic shock. Luckily the tumor was benign as well. I only ever saw my GP once after that, and that was to show him the pictures of the tumor my OBGYN had taken. He seemed to shrug it off, but said he was glad I was okay. Right.
I was told I would have a 50/50 chance of being able to get pregnant in the future. 12 years later, after trying with my husband for over a year and a half, we are now 5 months pregnant with a little girl. We are so excited to meet her, as we were thinking that 50/50 chance had been too generous.
I am so sorry that you had to go through this experience, but am thankful for you for sharing! So many comments are so similar, I am astounded and amazed at how common this situation occurs.
I also went through this when I was in my first trimester of my second pregnancy. I thought I had pulled some muscles in my right side due to the pain I was experiencing. I had explained this to my OB/GYN at the time, as I was also spotting. It progressed until my husband took me into ER, which the ER doctor said I was just constipated. I was sent home until the pain was severe enough for then my mom called my OB/GYN and advised him that if she had to bring me back in, he was going to have to deal with her! The ER finally did an ultrasound which showed the right ovary, fallopian tube along with the corpus luteum cyst all twisted right down to the base of my uterus. They shipped me to a high risk hospital where they ran more tests and set me up for surgery that day. The surgery ended up being pushed back until almost 10:00 that night and when it was done the surgeon came in and said how lucky we were that it hadn’t burst. It was the size of a nerf football and turning gangrene. They were very doubtful of the pregnancy continuing, but we delivered a healthy 8 pound baby boy later in the year. My husband and I were very concerned throughout the pregnancy about the baby, as was my mom and sister. We were very happy to know the fetus had not suffered any ill effects after so much trauma during that first trimester. The baby boy is now 30 and in his final years of Medical School!
I have tried 4 times today to make a comment about my wife and her misdiagnosis. I have left the keyboard in such tears (sad for a 71 year old man that is normally very together) I could not finish.
I lost my reason to exist 14 years ago after 4 colonoscopies in 5 years. The Dr. told me after the last procedure that I should take her to a Phycologist because it was all in her head. The last procedure he told me he had trouble getting the camera past a kink in her colon.
a few days later I took her to the E.R. and they operated immediately to find she had cancer of the colon so large it almost encompassed the colon that had gone to her liver. I went to the recovery room alone to a dark cool area where she was just coming around. (this is where this get very hard) I told her while holding her hand that she had little time left. We both cried harder than I believed possible.
She was admitted and I slept in the room for 3 weeks so I could help her rather than strangers. She had taken care of me for 35 years how could I do less, and it was my gesture of love that I could give her.
I had her funeral and visitation at our church then buried at the church. Even though our church is not exactly a small white chapel, it was standing room only with others outside waiting interment. She had 2 State legislators, one of the Heads of a Federal Reserve district there, just to show how others loved her but not as much as I.
I tell this story to show what could have happened to you but thank God it did not. I wish that I could have you feel what fills my heart for both you and my wife.
My friends ask how I could handle the burden an I say “God gave her her reward sooner than me”. 14 years still hurting but at Pease.
I truly hope you prosper in happiness and bring joy to those that surround you. Your memory, when you are gone will surly ease the pain of others. Live well and when you get to heaven my wife will be waiting.
I am not a Christian, but your story touched my heart, and whatever does await us, I hope you and your lovely wife get to spend it peacefully.
Oh, Chester, this is so heartbreaking. I am so sorry you both went through all of this.
I know how lucky I am that I went back and got a doctor who listened to me and wouldn’t let me leave until she figured out what was wrong. I now know that my enlarged ovary was leaking blood into my pelvis, which is the first sign of internal bleeding before it was about to rupture. I cry almost every day thinking how close I was to having this kill me, and the pain my husband and family would’ve endured if I had died, all because a doctor didn’t take the time to listen to me, or follow-up on tests that clearly showed something was wrong, but he just missed it all.
I’ve heard from more people who’ve had loved ones misdiagnosed and died as a result than I ever thought imaginable. I continue to hear from women who were misdiagnosed but were as fortunate as I was in getting a doctor who wouldn’t give up on finding an answer. I am truly sorry for what you and your wife experienced and obviously, 14 years later, the pain is still fresh in your mind and in your heart.
I am always grateful for each day I have here, and will continue to cherish my time and do what I can to make a change so that women don’t have to go through this anymore. And even though your wife isn’t here physically, I have no doubt she knows you’re still a kind and caring person who took time out of your day to share a story that will make a difference to a lot of people. Thank you for that.
I had this exact same health issue at the ripe old age of 13-years-old. The male physician who saw me on my first ER visit insisted on subjecting me to a pelvic exam, even though a)I was not sexually active, b) had never had a pelvic exam, c) was in so much pain and scared out of my mind, and d) I was a 13-year-old child and he was a MAN. After putting me through that, he said it was “gas” and sent me home. He ordered no other tests – no blood work, no imaging – and just let me walk out the door feeling like death.
The next day, I woke up in so much pain that I could not physically sit up in bed. My mother had to help me up and by the time we arrived at the hospital (for visit #2 in 24 hours), I couldn’t stand at all, so they had to bring a wheel chair out to the car. I still remember every bump of that 30-minute car ride, too. Horrific. After waiting in excruciating pain for what felt like ever (it was at least a couple of hours), I finally received some pain medication and was taken back for a CT scan. That’s when I was finally diagnosed and scheduled for emergency surgery. I lost that ovary and fallopian tube. Any longer and the risk of septic shock would have been extraordinarily high. The male physician – the one who subjected me to so much more pain (both physical and emotional) – the one who ordered no other tests and sent me on my way – had put my young life in danger with his gross misdiagnosis. I wonder if he ever knew?
20 years later and I still get emotional when talking about it. In those 20 years, however, I have learned how to be assertive and to stand up for myself. Knowing what I now know, if something doesn’t seem “right” and I’ve been dismissed by a male physician, I ask a female physician for a second opinion. It’s sad that that situation is a reality for so many of us, however, a male physician’s feelings need not be spared when it comes to your own life or death.
My daughter, at 9 years old, was diagnosed with an ovarian torsion. She came home from school one day in agonizing pain that caused her to curl in a ball and continually throw up. I sent her to bed and around 11pm, she came in and was crying and trying to curl up enough so the pain would stop. I eventually thought that it might be an appendix issue, so I took her to the emergency. We spent about 6 hours in the emergency room. They did xrays, MRIs, and even wanted to do an internal ultrasound with the big wand – on a 9 year old. They didn’t give her any mediciation for the pain or anything, just left her in a room and every so often came in to check on her. Towards the end of our “visit”, they finally pulled me aside and said “we don’t know what it is, but she has a mass in her stomach and we think it might be a tumor. We need to do more tests.” As a cancer survivor myself (diagnosed at 16 years old), you can only imagine what went through my mind. I was so devastated and upset that my 9 year old could have cancer. They came back later and said they were going to transfer us to the children’s hospital for more tests, so in an ambulance we went. As soon as we got to the children’s hospital, they looked over the other tests and immediately knew that it was an ovarian torsion. They had to perform emergency surgery, but I had to prepare myself for the fact that she could end up losing an ovary. Long story short…surgery came out great and they were able to revive the ovary in time.
It was probably the most heartwrenching time for me as a mother, so I can only imagine how you were feeling! It’s definitely not something that doctors really think of in the emergency room, but it should be. My heart goes out to you.
Cathy, thank you so much for sharing this. I can only imagine how terrifying that must have been. I had no idea a torsion can happen that young, but I guess it doesn’t matter what age you are. What a relief they were able to save her ovary!
December 22, 2011. I was seven weeks pregnant. I got off a train in Penn Station, NYC and suddenly felt agony. I told a National Guardsman that I thought I was having a miscarriage. They were great – ambulance – hospital – diagnosis: “some pregnancy related thing.” Opioids. I went home, relieved to still be pregnant.
December 23, 2011. I was interviewing a candidate in a conference room at a bank headquarters in Manhattan. I stood up, searing pain, screamed. Traders came running. I remember the paramedics taking me down the freight elevator and down the garbage ramp into the ambulance. They took me to Bellevue, which would have been my last choice had I been able to speak – it’s where they take the shooting victims on old Jerry Orbach episodes of Law & Order. I’m a white collar girl in a business suit. It turns out that decision probably saved my life, because the male, Doogie Howser-esque resident who triaged me on arrival heard that I had been on fertility meds, guessed ovarian torsion on the spot and sent me into surgery without waiting for an ultrasound. He was used to making fast guesses because he treated gunshot wounds and trauma all day. I was two feet off the gurney in pain. I totally understand.
I remember him telling me he knew what it was, he knew I was in agony, he was getting me help right now and it would be ok. He was right. They actually got it so fast (20 minutes from ambulance to OR) they managed to save the ovary. There are laparoscopic pics of my dark blue ovary turning pink after they untwisted it.
I miscarried that baby at 12 weeks,
But two years later I had twins via IVF – from that ovary.
There are some rare jewels of male doctors out there. I think the lesson I learned was that busy urban hospitals turn out some excellent diagnosticians who are willing to take risks. I am so grateful. I wrote thank you notes galore.
I am sitting here crying reading your story because I JUST went through this – I had emergency surgeries Monday and Tuesday of this week. I was seen in ER twice, given the same excuse of a kidney stone and sent home with Percocet and told to just let it all pass. After my husband forced me to go back I was transferred to another hospital where a female GYN dr saved my life. She removed my only remaining ovary (hysterectomy five years ago, removing my left ovary at the time due to cysts) because it was dead and so infected that it was the same size as my colon at the time of removal. I am so disgusted that I could have been allowed to die because of negligence and doctors who found my complaint to be unimportant. We cannot just throw pain medicine at every patient and imagine that they will be better. Thank you for sharing.
Oh god, Amber. I am so sorry you went through all of that. I hope you’re finally feeling better. Take care and get lots of rest!
Definitely a missed diagnosis but you are very wrong about ER doctors. First of all I’m very sorry for what you experienced as this was a bad misdiagnosis and you definitely did suffer. However, you are generalizing ER Physicians very poorly and this is coming directly from your frustration and from your suffering which is understandable. You say that ER Physicians are generalist, you could not be more wrong. The whole purpose of an ER physician is to consider and think of all the emergent possibilities that a patient can have. Unfortunately in your case the ER physician failed and misdiagnosed you. It is unusual to not consider a torsion when evaluating a woman with pelvic pain. It is not only engraved into a gynecologist but especially into an Emergency Physician to think of torsion in female with severe lower abdominal pain. I don’t feel that it’s appropriate for you to blog and rant about things you know nothing about. Sure I understand you had a horrible experience and you’re right to be upset and complain about it, but categorizing the field of emergency medicine and physicians in that field is completely inappropriate and you are completely wrong. Errors are always made in Medicine in every field. I have seen many specialists screw up in the diagnosis in their own field. ER Physicians are usually the advocates and last resort for patients. Doctors are humans and make mistakes in every field irrespective of gender.
FYI ER Physicians do not generally read CAT scans and usually they are officially read by the radiologist on duty. What you needed to have is an ultrasound which again is also usually not read by the emergency room physician unless you are in an academic setting, and usually interpreted by the radiologist. So if something was missed on the CT scan then it is not the entirely the fault of the emergency medicine physician which rely on the radiologist most of the time for the interpretation. What you can fault them for is not performing an ultrasound to rule out an ovarian torsion. Again what happened to you is horrible and I understand your frustration and I am truly sorry for what happened to you, the pain you suffered is terrible. But please don’t think you know anything about the field of emergency medicine and the Physicians that work in this field tirelessly.
Hi, J. Yes, I was frustrated and suffered, but that did not skew the experience I wrote about in any way. I think because I didn’t share every little detail, you are making assumptions about my experience. First, at no time did I generalize or say “generalist” about ER physicians. Yes, I wrote about the male doctor I interacted with on my first ER visit. I didn’t share the copy of the CT scan or radiologist report, where the radiologist (also male) said he could see a cyst on my left ovary, but my bladder, uterus and right adnexa were “grossly unremarkable” meaning nothing is wrong, there was unexplained “free-fluid” in my pelvis, and that my kidneys and liver were also unremarkable. And I didn’t share the doctor report, where even though the CT scan, blood and urine tests all came back negative, he said my pain represents as a kidney stone, and so that’s the conclusion he made without further investigation.
The doctor looked at that report and said he could see the cyst on my left but it wouldn’t cause pain on my right, so my pain must be from a kidney stone on my right side. What he failed to follow-up on was that where my uterus and right ovary should be, there was darkness. Why? Because I haven’t had a uterus for 9 years, and the right ovary was dark because it was dead. Why didn’t he follow-up on the “free-fluid” in my pelvis? If he had, he would have known the blood-filled ovary was leaking blood because it was on the verge on rupturing, which would’ve killed me from internal bleeding. Instead, he asked me if I was stressed, and he did a pregnancy test, compared my pain to “big guys, football players, even” when these men do not have the same organs that I do, and then sent me home with a prescription for narcotic pain meds. As a doctor, he failed.
The second time I went in, my pain still seemed like a mystery but this female doctor, who took the time to listen to how I was feeling, did a simple surface abdominal test and then knew something wasn’t right, took the time to assure me she would not send me home until she figured out what was wrong. All she did was go back and look at my CT scan to see my right ovary was enlarged and dark, added in her report “of note, the patient does not have a uterus” because the first doctor completely missed that, and then confirmed her suspicions with an ultrasound. I chose not to share the 8 photos I asked the surgeon for from the laparoscopic procedure, but the internal bleeding, enlarged dark ovary, and twist is all visible, just as it was in the CT scan, and then in the ultrasound.
I go on in my post to say I’ve had incredible male doctors in my lifetime, it’s not always about gender. But as I experienced, as well as what hundreds of other women I’ve heard from experienced at the hand of a male doctor during a health emergency, who either decided their pain was stress, anxiety, all in their head, or just being irrational or hysterical, this is something that is said to us by a male doctor who won’t take the time to realize a woman’s body is different from a man’s body, and should be treated as such, especially in an emergency.
The last thing that doctor said to me before I left was “my job is to make sure you aren’t bleeding or in need of surgery” when that was exactly what was going on with me. He failed at his job and fortunately, it didn’t cost me my life. It caused unbelievable pain and suffering that feels like I have PTSD from, but I will live. That isn’t always the case for other women who get wrongly misdiagnosed by a male doctor for a variety of health concerns ranging from our reproductive organs, breast pain or infection, thyroid, or our heart. We may not be experts in the field, but that doesn’t mean as women, we aren’t allowed to speak out when we experience something like this.
Dear Anne
We must speak out. I just read your response. “Free fluid” and dark shadows not being followed up on is common, not the exception as are women being dismissed with the words “hysterical”.
The most important thing is to educate teens and women through blogs if necessary, about medical terminology. In your particular case, despite your connection to the film industry you remain a role model.
Detailed description are crucial. Yes, teens can experience torsion. There is no proper research into the pandemic that endometriosis has become.
The fact that you do not have a uterus is of scientific medical interest to me. Many physicians are trained to believe that cysts happen through a reflux of endometrial tissue during menses. Wrong.
I apologize, I am typing quickly and am impossibly angry. These tragic stories are occurring throughout the UK/US/Australia and other OECD countries.
Please read *ALL* of the stories in the comments and tell us again how Anne’s trauma was an exception. They maybe trained, but they’re not accessing that training where it counts, obviously.
It’s human nature to get defensive when you feel like you’re being criticized, but as you can see from the number of stories here, there is a real problem with female pain being marginalized and dismissed. This is something we all need to work on together to fix. Defending the institutions and doctors that perpetuate the problem does not solve it.
You know, “J”, I don’t know you. But, I’m going to make some huge assumptions about you just the same. First, I’m going to assume you’ve got some great big ol’ brass balls to come on Anne’s **own** blog and say to the woman herself “I don’t feel that it’s appropriate for you to blog and rant about things you know nothing about.” Really? **You** don’t feel?? Wow. I mean, call me crazy, but I think if there is one thing she has learned one whole hell of a lot about in the last few weeks, it’s probably this one painful event and everything to do with it. In fact, I think she has done a great job of going back and finding out who knew what and when.
And then, not satisfied with merely being only infuriating once, you go on to add, “Sure I understand you had a horrible experience and you’re right to be upset and complain about it, but categorizing the field of emergency medicine and physicians in that field is completely inappropriate and you are completely wrong.” She has taken GREAT PAINS not to do this in any way. And if you weren’t reading this with your head shoved so far up your ass, you would see that. I’m going to guess that you are maybe, what, a first year? First of all, how do you have time to surf the internet? Shouldn’t you be studying? Because if you have time to surf you should be studying… if you aren’t studying, you are going to wash out, if you haven’t already. You sure have the ego of a student, but you sure don’t have the humility of a doctor yet. You keep going like this and you never will.
I worked in ER’s in teaching hospitals for years. Real doctors know that shit happens. You get tired, you miss things, 10 traumas come in the back door and you fuck…things…up. By the time he dictated those notes, he probably barely remembered her, and you know it. And since you know it, you state over and over again how doctors make mistakes in every specialty, regardless of gender, and they even fail to order ultrasounds sometimes!! But she’s wrong because she doesn’t know what she’s talking about! Talk about backpedaling and covering your ass!
And, oh by the way, “ER Physicians are usually the advocates and last resort for patients.”?? No, sweetie, that’s **nurses**. Nurses catch the boneheaded mistakes doctors, and newbie doctors, make all the damn time. I saw it every single day. That nurse you are yelling at has been there 10 years before you and she will be there 10 years after you- watching kids like you make the same mistakes every single year. You might want to shut your mouth and pay attention to what she has to say.
“It is unusual to not consider a torsion when evaluating a woman with pelvic pain. It is not only engraved into a gynecologist but especially into an Emergency Physician to think of torsion in female with severe lower abdominal pain.”
If that is the case, then why did NONE of the TEN ER doctors who examined me even THINK of ovarian torsion as a possibility during the course of the NINE HOURS that I was in St. Vincent’s hospital in 1996?
I was a female with severe lower abdominal pain. I presented with that from the time I was admitted. And over the course of nine hours, the TEN doctors who came to examine me proposed and tested me for the following diagnoses:
* kidney stones
* etopic pregnancy
* appendicitis
* blocked colon
* gas
Not once over the course of that NINE HOURS did any of those TEN DOCTORS even propose ovarian torsion as an option. It finally took a sonogram at 6 am, during which I cursed at the tech that I was done with them not giving me anything for the pain and I needed better care, did anyone finally notice that “hey, that ovary isn’t supposed to look like that” and they booked an operating room.
What you’ve been reading in here is damning and we understand you feel defensive right now. But please don’t think you know anything about what it’s like to be a woman dismissed by the field of emergency medicine and the physicians, like yourself, that work in this field in ignorance.
(Anne: greetings from the lurker on Twitter who called us both Amazons.)
I have so many comments, like the fact that I had a partial hysterectomy at 27, and ended up back in for ovarian crunches a year later. I even had a female ER Dr tell me I had bacterial vaginoses (so?)instead of a ruptured cyst because it was easier to treat with painkillers instead of the antibiotics that saved my life a few days later when the infection kicked in. I’ve had so many bad calls with Drs that I feel like I have to tell them what to do these days and that has caused compete distrust with their capability to “help” me.
This same thing happened to me almost two years ago while I was in my first trimester. It took a month and a half of doctors and ER visits in excruciating pain until they finally saw the twisted ovary on ultrasound. And it’s not like I was going to a small community hospital or rural docs who’d never seen anything like this before.
It was so awful. I have never experienced such pain and even worse was some nurses’ unwillingness to give me pain medication because I was pregnant (even though the doctor had written the order for me to have it as needed!). On the plus side, it made the rest of my pregnancy as well as my medication-free labor and delivery seem like a breeze! Though all is well that ends well, I do hope that we can get the word out and keep this from happening to other people.
Getting the word out can help. Thirty years ago my husband came down with Guillian-Barre Syndrome after having the flu a week earlier. I (with no medical background whatsoever) diagnosed him as soon as he mentioned his symptoms to me just because I had read in the newspaper about the people coming down with Guillian-Barre after getting the Swine Flu vaccine (during Ford’s administration) about 10 years earlier. The doctor at the local ER gave him a prescription for Xanax, which we did not fill. Instead we went to a large regional (somewhat famous) hospital ER, where after stairstepping through about 5 levels of medical personnel examining him, it was finally determined that he had Guillian-Barre, he was admitted to the hospital and about 8 hours later was on a respirator. If he had filled the prescription and tried to rest until the symptoms subsided, he could have stopped breathing in his sleep!
Anne – I’m sorry for your ordeal and thank you for making it public. As you’ve seen from the responses, diagnostic errors aren’t rare, in fact they are common. This neglected problem was recently studied by the National Academy of Medicine in a report (Improving Diagnosis in Health Care) that concluded each of us is likely to have one or more diagnostic errors in our lifetime, sometimes with devastating consequences. The causes reflect the complexity and flaws in our healthcare system (Was your CT read by a Radiologist, or the just the ER doc?; Was an online ‘symptom checker available in the ER?), and the human elements of clinical reasoning where doctors make the same mistakes we all do – they think of common things first, they settle on a diagnosis without considering other possibilities, and they trust decisions (diagnoses) made by others without rethinking things. Or maybe you’re right, male doctors are less likely to think about gynecologic conditions.
There is a growing interest in addressing diagnostic errors, led by a non-profit group that I lead, the Society to Improve Diagnosis in Medicine. We solicited that report from the National Academy and we are working actively to address the problem by improving education of medical trainees, and seeking changes in how doctors, health care organizations, and patients interact in the diagnostic process. I will be presenting your case as an example at a meeting of the American College of Obstetricians and Gynecologists in a few weeks.
Changing the practice of medicine is a tall order, but there are MANY opportunities to improve the current situation, starting with patient and provider education. We need all the help we can get – this is an area where you could help us have an impact if you’re interested.
I would be interested in talking about this more. Please email me at [email protected] with more info!
One of my very good friends is a doctor and the best thing he taught me — by walking me through my diagnoses and scans over the years we’ve been friends — has been to question things until they sound right to me, until they make sense in *my* head. A good doctor can get you there and if one doctor can’t, you keep going until you find one that can. (And yes, this unfortunately assumes you have the insurance and/or the money to do so.)
I’m so glad that you’ve come through this and so sorry that you’re still traumatized. We’ve all had missed diagnoses. You’re both lucky to have survived… and unlucky to have experienced so much unnecessary pain. My heart reaches out to you. (It’s really terrifying, isn’t it?)
I have never experienced anything like this in my life, but the one good thing to come of it is now knowing that I will never leave a doctor office or hospital if I feel like I was given the wrong diagnosis. I am just grateful it didn’t cost me my life to learn this lesson.
I am horrified yet not all that surprised by your experience. Very glad you are recovering. This is the second time I have read of this exact same thing – https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/ Please read that when you can. I immediately googled ovarian cyst ruptured woman ignored – and the story I recalled popped right up. It is horrifying that this happened to you and to her. I keep using the word horrifying – but well, it is.
I have experienced similar treatment (mistreatment?) from doctors in regard to “female” issues. Medical personnel mock people for using the internet to research, but often we get more information there than from doctors who dismiss us with pills.
Thank you for sharing this, and again – very glad you are well.