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.
I’m sorry you had to go through all of this and very happy to read Wil’s account of you feeling so much better so quickly. But this is the real story – thank you for sharing, for putting yourself back in the narrative, as it were. First person and primary source texts are needed in the struggle for better care. Good luck!
so because the taxpayers are not paying for your healthcare that means they are making you disposable.
so a politically stupid argument makes me think your story is leaving out some important details
I feel like you missed something in the narrative. She seems highly grateful for the medical insurance she does have and is acknowledging how well she has it. On the flio sode of that, realizing what you are going through and how that could be if you were less than fortunate is a very sobering feeling. I think that was more the point. Realizing what could be if circumstances were different. I recently went to the er and luckily it was just a kidney stone. I paid 250 upfront (my deductable) but i expect a fair amount to come due from my ct scan. With payments i can afford this. But i have family who cannot even manage that. We have made a business model off of the sick and needy and that is just wrong to me. And i would gladly pay a little more so that someone who has less can be better off.
Anne I was so worried for you both. That was such a terrifying ordeal and I’m glad the worst was over. I see a future where more women will not have to face the same fate because you will not let this stand. Much love to you!
(Momma of 3 girls, including twins)
I hope wil shared his dairy milk chocolate with you. 🙂
I’m dying to know what the original CT scan report says when it was read by a radiologist the next morning, rather than the ER doctor guessing during the night. I work with 157 physicians and they are human and can’t make mistakes, but this sounds like a very big one. I too am missing an ovary because a male doctor said it was a kidney infection. Luckily I was also stubborn enough to not take that as an answer and find another Doctor who diagnosed me correctly and got me the emergency surgery that saved my life.
On the plus side for women’s health care is the residency class of new doctors I work with is 80% female and 20% male. The scales might slowly start to tip in our favor.
Sorry meant to say human and CAN make mistakes.
I was once at a July 4th party where another guest was late because she was an ultrasound tech whose last task of her shift was to do an ultrasound of a woman’s Fallopian tubes because her doctor thought she had an ectopic pregnancy. The tech did do that (finding nothing wrong), but then because the symptoms sounded like gallstones to her, she took additional time to scan the gall bladder, too, and what do you know — gall stones! Then a few years later I had the same symptoms that she had described and so guessed it was gall stones, which my doctor then confirmed via ultrasound.
I was lucky when I had my ovary torsion (as lucky as someone in that kind of pain can be) in that the doctor reading my CT scan was a woman who saw what was going on. Also, I hear ya on that ultrasound thing. I had the gel one at first and then… well, you know. Needless to say I probably also flew up two feet during THAT examination. I was also lucky to be surrounded by a group of doctors and nurses (male and female) who saw my ovarian torsion for what it was and got me help as quickly as they could. I’m sick at heart to think of you, in the pain I can remember ALL TOO WELL even two months removed from it, and being sent home like it wasn’t worth looking further into.
My surgery was delayed a little because my insurance sent me from the emergency room in downtown LA (where I live) out to San Gabriel (which I wouldn’t have been able to find at the time if you’d given me a map and a headstart). But because of that transfer, everything from my ER stay to the ambulance that took me there to the two days I spent at San Gabriel Medical Center were covered. Completely. I received the “this isn’t a bill we’re just telling you how much you WOULD pay if you didn’t have Medi-Cal” and the amount was $81K+. I cried. I absolutely wept onto that piece of paper because I certainly couldn’t have paid %1 of that amount and my family would never be able to pay it for me. Without my insurance, I’d have made not only myself but my family destitute.
And thanks for the bit about being in the shower for the first time after the surgery. I cried when I took my first shower too. I’m not married, but I called my best friend weeping when I landed in the hospital. My mother and brother flew from Florida to stay with me that first week. I can only imagine the kind of worry and terror in that waiting room while I was under, getting my own little incisions. The one in my belly button is pretty much impossible to see unless you’re looking for it. I still have the scab on my left side, though the one on my right finally came off to reveal my little pink scar. I’ve never been insanely fit or anything, but I also cried for my vanity. I had a life-saving surgery about four years ago, but that scar is hidden behind my right ear under my hair. But these scars made…make me feel ugly and unattractive. Which is stupid but…it still gets me down sometimes. Also those medical adhesives are going to take way more time and scrubbing than you expect to get rid of them, trust me.
You figure out what needs to be done to make sure male doctors understand female-only problems as well as male bodies, you let us all know. I’ll be right behind you, whatever it is.
Thank you to you (and Wil) for sharing your experience. I hope you’ve had more well wishes than negative comments.
You are correct that there is something wrong with the medical care in this country and it seems it certain aspects we are going backwards.
Being your own advocate is a big help. Something I have been teaching my children. If something seems wrong or not quite right, speak up.
I am so glad that you are doing better.
Thank goodness you are alright after that terrifying ordeal. This post was eye opening. Thank you for writing down what needs to be said about healthcare in this country. I can only hope it changes in the future.
I once went to my primary care doc with severe abdominal pain. He did a CT & ruled out appendicitis and told me I couldn’t be having pain as severe as I described so I just needed an anti depressant.
Days later I was still doubled over in pain & my boss told me to go to the ER & demand a diagnosis. That night is a blur of pain, but basically every doctor blew me off until they were about to discharge me & I begged someone to please figure out what was wrong. Someone FINALLY listened and got me an ultrasound (and I also learned I could do a full Sigourney Weaver in Ghostbusters & sleep above the covers) and they discovered a large ovarian mass.
You would think that meant it was all fine from there, but the OBGYN I found was unable to schedule my surgery for almost a month. That whole time I had terrific pain & nausea, but the surgeon disbelieved my pain (if I was out of bed for more than 4 hours I started vomiting).
FINALLY, after the surgery, the surgeon realized that the mass was parasitic and latched onto my intestines. She actually admitted that she hadn’t believed/understood what I was saying I was experiencing because she hadn’t known until she got in for the surgery how very wrong things were.
It’s shocking how difficult it can be for a woman to be heard when she says “I am in pain.”
I had terrible periods my whole adult life — MUCH pain and LOTS OF blood (and borderline anemia) — that only got worse the older I got, but even after age 40 and 2 kids (a boy and a girl), then 45, 50, and 55, doctors and insurance would not authorize a hysterectomy — just kept me on birth control pills for years to tone down my periods. Then at 65 I was diagnosed with uterine cancer. IF THEY’D REMOVED THE DARN THING 20 YEARS EARLIER (or probably even 5 or 10 years earlier), IT COULDN’T HAVE DEVELOPED CANCER!
Thank you so much for sharing your experience with us.
Thank you for sharing your experience.
My misdiagnosis was acid reflux. Rolled into a ball sobbing from pain is not acid reflux. Acid reflux does not need morphine. After two years of that, a lovely male doctor said that didn’t sound right and sent me for a scan. Admitted to the hospital and had my gallbladder removed. Gallbladder was full of over 100 stones. I’ve had ho pain in that area since. (Now I do have acid reflux.)
Like so many others I’m glad you’re well and look forward to what comes next. I hope Wil is doing well too. I wish I knew you well enough to love you both…you have my affection and admiration.
Please tell us you plan to sue for malpractice. That seems to be the only way to ever get through to the medical community. I mean, you almost died because this doctor obviously didn’t know what was going on, and claiming it was stones was obviously a guess he wasn’t sure about since he threw so many various prescriptions at you to make you go away.
Women’s health issues need to be recognized & taken seriously. Take, for instance, endometriosis – some of the medical community still refuses to acknowledge this exists. Women get told “it’s not that bad.” It often takes 4-7 years to get an official diagnosis, and usually after many a dance of the doctor shuffle. Shamefully, it isn’t just male doctors who treat us this way, women do too.
Look, I know you and Wil certainly don’t need the money, and if you don’t want to sue on that basis alone perhaps donate it to women’s medical funds or something…. but please, a lawsuit will help the rest of us women.
While I was reading Wils account of events I was shaken to my core with complete unprofessionalism of the doctors during first visit. And relieved when you have met competent one.
But I am saddened that in your text this is stressed that incompetent ones labeled as “male doctor” 9 times and finally you have met “female doctor” which leads to relative happy end.
While factually this is true, it leads to conclusion – “go seek female doctor”.
Perhaps you missed the part where I said I know there are excellent male doctors and how I had one for 21 years and another for over a decade. In my case, the female doctor knew to look at my ovary because A) She is trained for that B) She has them herself so she knew to look for that. I finished by saying the hospital needs to have doctors on staff who are educated about women’s bodies. I didn’t mention gender because it isn’t about only female doctors knowing women’s bodies. Sorry you feel saddened but I think you may have missed everything else and just counted how many times I said each thing. It’s ok.
Sorry, really sorry. My ego. 3 generations of my family are doctors – so got upset before reading carefully all text.
Or we could encourage hospitals to ensure proper support for their ER staff. A radiologist should be reading the CT…NOT an ER doc. Male or female, ER physicians should not be reading their own (you know the radiologist will be reading it…and charging for it too…in the morning).
I saw a magazine article within the last 6 months or so that had a list of ways to have better health and one item on the list was to have a woman doctor — and this list was not even a list just for women!
Anne,
My ovarian cyst was 5.5cm. I was 19 at the time and living with my parents. My mom took me to her OB/GYN because she knew he had ultrasound equipment at his office- the OB, a man, trained to treat women, also assumed that my pain was just something gastrointestinal. My mom insisted that it is unusual for me to complain about pain and pushed him to investigate further. After a couple ultrasounds, I had surgery that night, only AFTER which did the OB confirm I’d had a torsion, and had I come in much later, I would have lost my ovary.
Thank you for sharing your story, so more people know that this kind of thing exists. And thank you for your commitment to improving the situation. Look forward to hearing about it.
When I read Wil’s first post I thought “Damn, she was misdiagnosed AND she even had her husband with her.” As a woman with chronic illness, I have found I get better response from male doctors if I have a man there with me to advocate for me, to pull them aside out of my earshot and say thinks like, “Listen, she’s pretty tough, and I haven’t seen her in this much pain before. She downplays how much pain she’s in. I’ve seen her break bones and joke about it (which is true), etc.” I’ve seen regularly dismissive doctors whose visits typically last an average of 6 minutes go to 20 minutes when my husband attends… and they will listen to him do all the talking about my symptoms. It’s infuriating, but whatever works, right?
So, we have developed this method for feeling out which doctors are this brand of misogynistic so we can tag team and he can take the time off work to come with me until I can find new ones. Rheumatologists are hard to come by, though, so it takes a long time. It’s frustrating. I have just about given up on finding a decent OB/GYN. I live in a red state and can’t have children because of my illness. But, I’m also in my early 40’s. I’ve gotten so many “it’s not too late” speeches before they even ask me what *I* want as if my only goal in life should be to have kids. I can’t even use my hands to lift pots and pans some days- and you want me to have kids? They have a whole political agenda for my body before I can even say yearly exam and good bye. Please don’t try to upsell me the whole 9 months and a C-section between the hours of 9am and 4 pm… I’m just here for a PAP smear and a yearly, thanks. (sigh)
OK, rant over. I’m so sorry for what you went through and I hope that you never have to go through it again. If you end up needing advice on how to check your bills and insurance EOB’s feel free to get in touch- I’m an expert by now. In my experience, there are errors about 40% of the time. Also, some of the doctors in your hospital might not be contracted providers in your network, even though your hospital may be a contracted provider in your network. You can usually get them to write those off- especially in emergency cases- because you have no way of knowing that ahead of time.
Greetings from Florida! So sorry you and Will had to go through that, but I’m glad to hear you are doing better now. Wil’s recap of the entire ordeal was quite the horrifying story. Get lots of rest and feel better soon! 🙂
This is almost exactly what’s been happening to me over the past year! Last summer, I had bad abdominal pain, unexpected bleeding, could barely walk, and was almost passing out. I got a Lyft to take me to the ER, because I didn’t want to risk another ambulance bill fiasco, but when I got to the ER the doctor that saw me was probably in his 50’s at least and generally treated me in a very condescending manner, like I was a 12-year-old who didn’t know that periods hurt and discharged me with a diagnosis of “dysmenorrhea” without having done any imaging or tests beyond the standard pregnancy test. (Oddly, when I later tried to look in the online Cedars Sinai system to complain about him, the information about that visit and only that visit was gone)
I was in the ER a few times after that. The diagnosis most of those times? Kidney stones, and sometimes on the opposite side of the pain I was complaining about, and usually in an entirely different part of my abdomen – it wasn’t a wrong diagnosis because I do have kidney stones that often, but at the same time the fact that the pain I was coming in for was so bad that I literally *didn’t notice kidney stones in comparison* really should’ve been a red flag for someone!
Eventually, I was in the ER during a brand new doctor’s second night on the job, and in his super-anxious thoroughness he checked for every cause of pelvic pain that could be checked for in the ER, and there were cysts!
So I’m so sorry that this happened to you, but know that you’re not alone, at all, there’s lots of us who share that experience.
PS. I did eventually have to have surgery with one cyst, and organic solvents are the best at removing medical adhesive – personally i suggest the regular nail polish remover because acetone is the strongest thing that’s easy to get, but it’s designed to safely come into contact with your skin in small amounts.
Please read as much as you can on Ovarian cancer and make sure your Doctor is up to date on the diagnosis of possible symptoms of this disease. Don’t ignore or brush off lower stomach or bowel symptoms of any kind. My wife passed away 10 months ago from this dreaded disease . By the time the disease was diagnosed she already was in advanced Stage 3 and only survived for 2 years. Please be vigilant,educate yourselves as much as possible.
I’m so sorry to hear that, George. Educating ourselves is vital and I know I learned a valuable lesson in this. Take care.
Oh Anne! I’m so glad you finally had a responsible doctor and are doing better. I’m so angry for you.
My mother, who has a documented autoimmune disease, was once told by a male ER doctor that he was sending her home without treating her because she wasn’t going to die that night, even though she was having a bad flare up. She was so upset by that that when she got into a bad car accident years later she asked to go to a further away ER so she wouldn’t go back to that one.
That’s awful. I’m so sorry. Funny thing for me is the first doctor said “I’m just here to make sure you’re not bleeding to death or require surgery.” Um…yeah. I did require surgery but thanks.
First, I am so glad you finally had a doctor who genuinely listened to you and took the time to find the right answer so that you aren’t experiencing that pain anymore. I can’t imagine how exhausting and frightening it must be to have an experience like that. I really want to thank both you and Wil for sharing your story.
I have had discussions with other female friends about their experiences with the medical profession and it is so disheartening to know how often things like this happen. In some cases it can take years to to find a doctor who won’t just dismiss symptoms out of hand because they are dealing with a female patient.
Right now I’m lucky enough to be living in the UK where I’ve been able to get medical care from the NHS. Having lived here for close to four years, I just don’t know what I’d do if I went back home to the US. There is no way I’d be able to afford health insurance. The financial toll is certainly terrifying but as you point out, the emotional toll can’t be quantified. The emotional anguish both you and Wil describe speaks volumes about the kind of impact misdiagnoses can have on patients and loved ones.
I hope in the next few weeks both of you can take some time to treat yourselves and do some self-care. Know that so many of us are thinking about you and are sending you lots of good vibes through the interwebz. Wishing you and Wil my very best wishes and do please let us know what we can so to help you combat this sort of thing in the future. We’re with you.
I always sit here wanting to say something intelligent or witty. All I can think of is I’m so glad you are ok. You have never met me, nor I you. I “met” you through Wil. We are the same age, as are our kids except mine are girls. Other than that our lives are completely different. But reading your tweets and posts over the years it feel like we’ve been friends for years. Wil’s account of what happened scared me for my friend. I told my husband and older daughter what had happened. It felt like I was telling them about my sister. The irony is I “talk” to you more. So “friend” please be safe. Give your body time to heal. Baby oil will help remove the adhesive left over. Let Wil take care of you. Let Seamus & Marlowe nuzzle you. Let Watson be Watson. I love that he took his paw off you tummy, but didn’t leave you. He knew. Hugs*
This is so sweet. Thank you! Good call on the baby oil. I know my doctor said to leave it alone for 2 weeks and then I could work any excess off, but baby oil sounds nicer than acetone or Windex. HA!
Windex sounds so like the father on My Big Fat Greek Wedding- it’s the answer for everything!!
On March 25, 2017 at 4PM, I experienced such severe sudden abdominal pain on my lower left side I screamed and scared my kids. I then crawled around my house that day and the next, trying to care for my 3 and 5 year old while my husband had to work. At 6:45PM March 26 I begged my husband to take me to the ER, certain it was no longer the same OTHER severe abdominal pain I get that’s 2 years old and still undiagnosed.
At the ER I was in such severe pain I was trying not to scream and throw up, standing and gripping the back if my chair and rocking, or kneeling in front if it on the floor. I too was told it was kidney stones, and then proceeded to wait more than 3 hours to be seen. Our ERs gave screens showing (anonymously) stares how long the average wait is and how long the longest person has been waiting. Wait time average was 1 hour. I was the listed longest wait.
Once I finally got in, around 10:45, I had a nurse who recognized something was really wrong. She got orders from the doctor for IV fluids, Gravol, and pain meds, and had just started them when he came in. He got a CT, and by 3AM they knew there was a huge mass and suspected torsion. They kept me full of meds until we could see US at 7AM, where I too launched off the table multiple times through the internal, sobbing and gagging. The US tech and ON kept apologizing though and tried hard to be kind and gentle. It wasn’t there fault it had been delayed and all meds had worn off by the time they got to me, and that it took another half hour for a porter to get me back to the ER where I could get more meds. The nurse running the US desk was however less than sympathetic and never inquired into either delay.
That pain I screamed at on Saturday at 4PM turned out to be a 5cm hemorrhagic cyst that torsioned the left ovary, wrapping the fallopian tube around it and cutting off blood supply to all. I finally had it removed at 2PM Monday, when it burst during surgery leading to complications and bleeding necessitating a stay until Wednesday afternoon.
I didn’t go in initially because previous experience has taught me pain in women is ignored. When I finally went in at a 9/10 I was left for several hours behind others less ill than myself because it was assumed I was exaggerating a kidney stone.
The good news in this is – I was already done having kids, and all but my Rx were free because I am Canadian, a fact I am eternally grateful for.
Pain treatment in women is appalling and needs a completely new approach in med schools. I don’t think I’ve yet seen a story of ovarian torsion where the woman was taken seriously off the top.
Get well soon! Obey the lifting restrictions your surgeon gave you and snuggle your doggos!
First of all- I’m so grateful you are okay, that you have a wonderful supportive husband and you have excellent health coverage, because let’s face it- when you don’t have it- it sucks even more. But when you have it after not having and the reality of that sinks in… well you know what that means for people who don’t. It’s sobering af, and that’s an understatement.
My experiences with male doctors are not positive. Basically dismissive arrogant pricks who just want to prescribe you a Rx and shove you out the door. One encounter STILL pisses me off. THAT was with good insurance. I shudder to think of those who can’t even afford to be dismissed. Because that still costs money.
so many problems would be solved with healthcare for everyone. How about the stress involved in obtaining it… making sure you have it and that it covers what ails you. Based on my experiences, big Pharma rules. But don’t diss them boner pills. They be life. *eye roll*
That’s absolutely awful that you had to go through two misdiagnoses! I do believe that there should be more advocacy on behalf of female patients. There are many excellent male physicians, but as your case shows, just one bad one can actually be dangerous. Our 16 yr old daughter experienced horrible back pain two years ago. At first, we thought maybe she had just stretched wrong during field hockey practice because the pain was there, but not bad. But in the middle of the night, she was crying and lying on the bathroom floor in severe pain. We couldn’t imagine what it could possibly be, thinking maybe it was something with her kidney where she had said her back pain was earlier in the evening. We sped to the ER, with her holding a bucket because she also was vomiting. They took her to a room immediately in the ER and got an IV started. We were actually feeling relieved because her pain was easing, at least to the point she wasn’t sick and crying anymore. We did have a male ER doc, who is fantastic (with 3 kids, we’ve been in the ER more times than I would like to admit and have seen him multiple times!) and he sent our daughter for a CT immediately. Luckily, he was actually able to read it and said she had a large cyst on her ovary. The reason her pain was easing up was because it had burst, which they could see on the scan. He recommended that she see a gynecologist as soon as possible, but felt there was no need for surgery. My OB/GYN was able to see our daughter just a few hours later and was pleased with the care she received in the ER. She agreed that our daughter didn’t need surgery, but recommended that she start birth control pills as a means of controlling the ovary. Two years later, our daughter has a birth control implant and there’s been no more problems with either ovary. We know how lucky we are to have a small-town hospital with physicians who will actually listen to you, as well as having excellent health insurance. Too many people are injured or even die from medical mistakes. I’m not saying I’m expecting physicians to be perfect, but they need to spend time with a patient, male or female, and really listen to what they’re saying. That’s what a great physician does.
I’m so sorry for what you went through. You’re right about how ridiculous it is a that women’s bodies are ignored this way (even football players doubled over in pain? Oh well I guess if it’s something a real man complained about your suffering might be legit). I live in Canada so I don’t suffer from your horrifying insurance situation, but Ive
Oops. .. hit comment too soon…
Anyway, I was going to say I’ve known women here who suffered like you did and were also sent home. It’s a global problem.
I’m glad you finally got the care you needed. I hope you fully recover soon, body mind and spirit.
Yeah, I thought it was really odd to be compared to a football player. What does that even mean? You’re just a girl but hey, even big football players are brought to their knees by this pain so that makes it legitimate pain? Who knows. I just hope there’s a way to make sure hospitals always have an OB/GYN on staff for the ER because misdiagnosing for lack of education in that area is a liability to them and puts our lives at risk.
Anne,
I’m so glad everything ended up getting taken care of! I follow you and Wil on social media and adore the work you both do, but I don’t think I’ve ever been so worried about 2 people I don’t even know! And hearing about that potentially life-ending, easily avoidable error made me so angry! Thank you for sharing your harrowing experience with us, and for boosting the voices of others who have encountered similar problems. Best wishes in your recovery.
I am sorry you experienced such horrific pain, and for as long as you did. Reading Wil’s posts and tweets, I felt helpless. I don’t know you from Adam but I prayed that you would get the help you needed. I wish you a speedy recovery. I hope you can reach out and share your story with more people to help educate the health system, public and whomever else can help make a change.
I read Wil’s blogs. I, too, write when I don’t know what else to do with my anxiety. I felt his frustrations and anguish. I feared for you. This could’ve had a worse outcome. I’m so relieved you are now okay.
I have experienced both sides of this issue – as a nurse and as a patient. I’ve witnessed misdiagnoses. I’ve been misdiagnosed multiple times because I am a woman.
I cannot recall how many times I went to the ER with cardiac symptoms / arrythmias, over the years. When my heart wasn’t racing, I often felt overly exhausted – another cardiac symptom. My heart always checked out fine. My baseline labs were always normal. The doctors scratched their heads or they placed blame – blamed caffiene and, eventually, blamed it on perimenopause, instead of testing for other root causes. I was fortunate enough to work with a male doctor who finally figured it out. He listened to me. He heard me. He ordered costly bloodwork (costly because my ‘good’ insurance company didn’t want to pay for the testing – another ginormous stone that needs to be upturned) to confirm his suspicions. My arrhythmias were not estrogen (or the lack of) related. It was my thyroid. More specifically, Hashimoto’s autoimmune thyroid disease AND autoimmune b12 deficiency anemia (which also causes the heart to race and can cause seizures and nerve damage). My malfunctioning thyroid was under attack, causing it to, at times, be overactive (resulting in racing heart). It eventually became so damaged, that it’s now fullly underactive. When my heart raced, it raced wildly (the highest recorded was 300 bpm) and my blood pressure would drop as low as 60/0. I feared sudden cardiac death. I feared dying in my sleep. I feared leaving our children without me and my grief-stricken husband to have to go it alone. I feared long term damage to my vital organs. A racing heart inhibits blood flow to all organs. I knew I was at risk for kidney and brain damage. A person, whether they’re female or male, shouldn’t have to live in fear because of a lack of diagnosis. Here’s the kicker – this started when I was 13. THIRTEEN. I was diagnosed in my late 30s. I am so grateful my fears were never realzied.
Once I was diagnosed, I was treated with thyroid meds and b12 injections .( I do them weekly at home. Being a nurse paid off.).Once I was treated with medications, the bouts of racing heart lessened and the unexplained exhaustion resolved. I began to feel human. I didn’t know how sick I was, until I wasn’t. The medications are working. I have only minimal nerve damage from being b12 deficeint for so long, thankfully! I feel like I have my life back. It shouldn’t have gone on for so long. But it did. As you know, it still does.
Anne, you are already an ambassador and advocate for women’s health issues. I know when you are fully recovered, you will set out to raise more awareness that will bring about much needed changes. I am here as a resource – both professionally and personally – if you need me. I’d be more than happy to join your crusade.
Agian, I’m so incredibly relieved you lived to tell. Hugs and well wishes, always.
Tammy
I’m so sorry that you went through this. At first, I wrote “had to go through this” – and then I realized had to is flat wrong. This shouldn’t have happened. Your earlier physicians ought to have realized, just as you said.
Thank you so much for being braver than many of us know how to be, for discussing what you’ve been through, and for your willingness to take a stand. I think a great number of us are behind you all the way.
I hope you’re both feeling better, my thoughts are with you and Wil.
I’m glad you’re okay. My mom had a huge abdominal infection from intestinal perforation and it was missed during two separate ER visits and at least one CT scan.
The infection was so big, it had shifted everything inside the abdomen off to one side, yet it was still missed. As a rad tech who does CT myself, I find this to be mind boggling. The hospital tried to explain the missed diagnosis by saying they didn’t have radiologists on duty that late at night. By the time it was properly diagnosed at a larger hospital, she required immediate surgery and nearly died.
I have come to realize that all the talk about the US having the best medical care in the world isn’t even remotely true.
I’m glad you got it taken care of and ate going to be okay, because I’m not sure if I could get by without pupdates!
I’ve been reading both your and Wil’s blogs for a long time, so when Wil’s first post about this came out, I was so worried. I feel close to you both, although I rarely comment, just because anxiety sucks. (I’m getting help for that, and a big part of that is you and Wil talking so honestly about mental disease.) And then I was so relieved when I read his second blog post, although also angry for you both at how this was missed the first time.
For years, ob/gyn’s have told me that my menstral cramps and heavy bleeding was normal, I was making a mountain out of a molehill, and I just needed to suck it up. Another told me I was just getting older (at 27), and another told me there are just more toxins in the air. Long story short, I finally did my own research, figured out what might be wrong, went to a specialist for that thing, and I was right. So, at 37, I finally know that it’s fibroids and endometriosis. I’m sitting here recovering from my own laparoscopic surgery to remove the endometriosis and the fibroids, the biggest of which was the size of a baseball.
Anyhow, I’m so so so glad you’re still on this earth despite doctors who aren’t paying attention &/or need education or whatever. You inspire others, even when you don’t know it, just by being you. And so does Wil. Yall are great people. Yall’ve made my life better. Thank you 🙂
Anne,
I’m so sorry to read the news about this but SO glad you are recovering quickly! As i read through your post i kept racing in my head “please don’t let it be septic!” What a relief to read you landed in the hands of a competant Dr. Who properly diagnosed thr problem! I too had an ovarian torsion and the pain is indescribable. I was 15 when i had mine (i’m 46 now) After spending the night in the ER arguing with the Drs that i was not pregnant (i was a virgin) them not believing me so making me take a pregnancy test…they still couldn’t find out what was wrong. It wasn’t until i started throwing up that the rushed me into surgery and discovered the torsion. Ovary was the size of a grapefruit and septic…and i was in the hospital 2 weeks while they waited to see i’ve i was going to become septic. This event set off years of hormone replacement therapy and exposure to Drs who never really had the empathy to say the right things(like…do I feel like less of a woman). I am just 1 voice in a sea of woman who are teaching out to you in your time of frustration and pain, but I hear you, i feel you, and I want to help. If you gather a group of us to Talk, plan, and act in whatever way we can to help each other i would like to help in anyway possible. My email is [email protected].
Best wishes for continued healing! 💜
Anne, thank you for sharing your experiences openly and honestly. Your courage and openness encourages others to do the same and I firmly believe that that’s the road to change.
I’m so sorry that you had such a terrible experience, and I hope that the universe balances it out with something wonderful!
Anne,
I’m so glad that they figured out what was wrong, and so sorry you went through so much pain (and that your family went through so much stress and worry.) The topic of sub-par care for women has been on my mind frequently in the past year or two; increasing numbers of stories are coming out on the subject. I have a chronic disease that will cause health issues later in life for me, and I’m afraid that if nothing changes I’m going to be in for some very bad times in the medical establishment. I look forward to suggestions about what we can do to create change – I’m on board!
I’ve been reading Wil’s blog for 15 years, and I’ve been following you since you got on Twitter and started posting this blog. Whenever I hear that either one of you are going through tough times, I worry. I’ve only met Wil once, and I saw you from across the room in Orlando once, but I still feel like I know you two. It’s weird, but I’m sure there are lots of people like me who feel this way.
I was extremely worried about you while you were going through this. I kept checking Wil’s twitter feed and blog to see any updates. I am so glad they were able to find what was wrong, and I’m horrified that it took so long to do so. I’m so sorry that you had to go through that, and I’m just thankful that it’s over.
My wife had one of these cysts burst once when we didn’t have health insurance. She went to a women’s clinic and several doctors offices for help, and all of them turned her away. It horrifies me to think that she could have been in this situation, and no one wanted to even try to find out what was going on. Thankfully, the pain passed and all was well after several days, but it could have easily gone the other way.
Take care of yourself, and feel better, Anne. There are many of us here who are keeping you in their thoughts.
I’m so glad that you’re okay at the end of all of this.
Being your own advocate with medical professionals is really important. It’s not something that anyone tells you that you have to do.
When I was 19 and away from home for university, the doctor at my school had found a lump in my breast, but had diagnosed it as a fibroadenoma (a common, benign cyst) and told me that I should keep an eye on it just in case it grew or started hurting.
I went home for the summer and noticed that things were starting to be painful. I went to my family doctor ( female, older, used to dealing with elderly patients) who told me that it wasn’t her policy to give women under 25 breast exams. She didn’t take me or my concern about the pain seriously until I told her that the cyst had become a visible bump coming out of my breast – it had grown to the size of a golf ball – this took ten minutes of back and forth because I wouldn’t give up without her examining it. It was surgically removed later that summer.
It’s already hard figuring out how to become an adult and to go to appointments without a parent without doctors ignoring or brushing off your questions and concerns.
First – I am SO GLAD you are doing better!
Second – I understand that Humans are fallible, but… I have a couple of items.
A couple of decades ago I worked in a clerical capacity at a clinical laboratory who supported local HMO’s along with a few doctor’s offices and nursing homes. The chief technician at the place stated to me that if he collapsed on the street, don’t take him to one of his clients. This was after we had spent the better part of 3 hours calling facilities to notify physicians that the test results came back with serious issues. i.e.: Potentially life threatening to the patient. From not getting an actual doctor at the facility (it is odd to explain to the janitor that Patient X needs immediate attention) to speaking with a doctor who had no clue what we were telling him, a person tends to come away with a rather jaded POV.
After I left that job and moved on, I also changed medical insurance carriers and doctors. I chose a female doctor and during our first meeting as we were getting to know each other I told her that I expected to be able to ask questions and get understandable answers about my care. I said that if this was a problem to let me know then and there. She looked at me and asked why? I told her about my lab experience and that I had buried a parent due to a doctor’s care. She said she had no issue with the question thing at all – in fact, she wished more of her patients would ask questions.
I lost my mother thanks to a doctor telling her that the illness we all witnessed was in her head. He had run tests, done everything he could think of and there was nothing really wrong. Ten years later her youngest sister developed the very same symptoms and was taken by her family to specialists to diagnosed (and cured) the issue. It wasn’t in her head, it was in her lungs.
Over the years I’ve had a few physicians, mostly male, and I can tell you that the best care I got was from the lady I mentioned above and one particular man. The rest, for whatever reason, made me fell pretty much like a side of meat sitting in the chair waiting for attention.
Footnote: I worked for the lab for a couple of years and I can tell you I have NEVER seen the professionalism, pride in work, and simple care for the patient my coworkers provided on a daily basis anywhere else. These folks work long, hard hours. I believe it takes someone very special to work in health care. I also believe they can be overworked to the point where their jobs become almost impossible and the patient does not get the care needed.
Sending hugs to you and Wil. So glad you are home.
A former coworker of mine named an ovarian cyst Susie. Susie was kind of a bitch, but nothing like yours was!
My favorite GYN was a man; he had amazing technique and could get in and out for a routine pap almost before I noticed. No insult to the others, including my current doc; my cervix is apparently a bit tricky to find, and she’s a family practitioner, not a GYN specialist. At least I’ve been relatively lucky in the ladybits department, aside from a mediumish fibroid that doesn’t need to come out at the moment, which causes hideous cramps that mostly go away on the pill. For the lack of copay on said pills, I can only say, genuinely, “Thanks, Obama!”
I am glad you’re on the mend, and I hope Wil is too. He’s a keeper all right.
Sue.
Because a public record of their incredible malpractice, is what makes doctors learn.
Sue.
Because if you don’t, they just might kill the next patient.
Will now close with this musical admonition, after repeating,
Sue.
“Don’t think twice, it’s alright.”
Reading Wil’s blogs had me crying uncontrollably. Because I have met both of you a few times, I feel like I really know you and I couldn’t bear the thought of you in such pain. I am relieved that you are going to be okay, but your care that first night is unacceptable. and may happen to more women, as Bonnie said. You may not remember that I work in a law firm, but if you do decide to go the malpractice route (which I heartily endorse), please let me know and I will try to get some recommendations for a good attorney who specializes in this type of practice.
I love you both!
Laurie
I am so sorry you had to go through all that. This is uncalled fore. I am glad you are doing better😊
I am so sorry that you had to endure all that, and so grateful you finally managed to get a doctor who looked at the evidence instead of making assumptions. I’ve been in and out of hospitals for four years with an autoimmune disorder and know the importance of getting doctors who take women seriously when they describe symptoms (and don’t assume male bodies are the standard).
Wishing you a full and swift healing.
Hello Lady Anne, first off is that I’m incredibly grateful that you and Will made it through this crisis. Thank you also for trying to raise the profile of how insanely urgent our need for competent medical care continues to be.
Another instance of this exact same thing in the Atlantic – I’ll put in the link – was the fact that many doctors underestimate women’s pain, see it as overreacting, and dismiss it to the detriment of their female patient. (https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/)
I have dealt with that same issue more than once. twice I ended up needing surgery 1st time was because the cyst ruptured and I had been bleeding internally for 3 days while various drs tried to tell me I was exaggerating. The 2nd time because I had a 19cm (yes 19cm) cyst and I finally was in more pain than I could manage consciously(and I have a high pain tolerance). That time I still had to argue with the female dr to order an ultrasound because she didn’t believe me. In my cases, unlike yours, my initial drs were female. They still didn’t believe me or think it was that bad. The 1st time I went to the ER after the once cyst had ruptured, it was an old male OBGYN who looked at my results and ultrasound and said ‘I don’t know why they told you you were pregnant. You aren’t pregnant. You’re bleeding internally. That can cause a false positive on the standard pregnancy test. I think you have a ruptured ovarian cyst.’ Which is what my mother (who has also had the same problems) and I kept telling the female doctors, but female drs just thought I was in denial about being pregnant. I have had some less than helpful male doctors too, but in my experience there are just as many bad female doctors, which astonishes me. I felt like I should get more understanding from them. I think more education about women’s health issues all around would be a good idea. Also, all doctors should be taking women’s complaints more seriously and not just assume we can’t take pain.
I am so pleased to hear that you’re on the other side of it all now, and all that I can wish for you is that the healing is straight forward and comfortable. The battle to have women’s health issues properly recognised…well that’s another challenge.
I actually had the reverse problem. Three weeks after the birth of my 3rd (and last!) child, I was experiencing horrific abdominal pain, and it felt gut related rather than uterine. I went to my GP who was concerned and promptly referred me to hospital. At the hospital, the female doctor was really quite dismissive – OBVIOUSLY it had to be uterine, and it would just settle. I told them it felt like my intestines were caught up in there, but no, that couldn’t be right. They sent me home. When I went to see my ob/gyn at the six week mark HE was horrified. A Laparoscopy later, and he’d identified scarring that resulted in the loss of my left Fallopian tube. His opinion? Yes, when everything was readjusting after childbirth I had indeed ended up with my organs getting caught up.
Whatever you can do to raise awareness, you have my heartfelt endorsement! I’ll gladly help you wave that banner as well
You’re a trooper, Anne. I’m so glad you were able to get the care you needed, in the end. We, your “people”, are grateful that you and Wil don’t and won’t back down from things being made right. So many of us, myself included, just take our situations for granted, and acknowledge when we are blessed with good health.
Keep healing! 🙂
living in europe, where we have proper governmental health insurance, it is bad enough that such misdiagnoses happen a lot. i just realised, reading your post, how one often forgets that it is something we even pay for these (be it via taxes, insurance fees or – in the US – directly out of your own pocket).
i seriously do not quite know what to be upset about the most – sexist medical praxis, irresponsible doctors in general, presidents revoking public health care, …
any way, i am very happy that you are feeling better and hope that you will be up and about again soon. the silver lining here, i guess, is that a wonderful person like you now has this topic on her mind and is obviously set on doing something about it.
get well soon, anne! best wishes.
What a crappy experience you had. So sorry. I had a softball sized cyst on one of my ovaries when I was 23, and only discovered it due to the torsion, which I can agree with you is the most gut wrenching, horrifying pain. And thanks to their reluctance to perform “unnecessary” procedures, they thought it was on the wrong ovary, so I wound up with a full smiley face scar across my stomach since they had to keep opening once they realized where it was. The whole thing sucked.
I’m glad you’re doing better!
You’re way too old for him, but I’m sorry you’re having medical issues.
What a shame our 3 year age difference bothers you so much, thereby completely negating your apology for my life threatening medical emergency. Love knows no boundaries unless you put them on yourself.
What is wrong with you? In what universe is that acceptable to say?
I’ve had endometriosis since I was 16. I’m 56. 9 surgeries later I have lost count of the male doctors who told me it was all in my head or not as bad as all that. I got the help I needed but had to fight tooth and nail to get it. When I found a female specialist, she didn’t doubt my sanity or sincerity. She just took care of me. I am sad that today, all these years later you had to deal with this culture of… what is it… sexism? Misogyny? In 2017? Really? You could have lost your life, and your family and loved ones could have lost you. Your outspokenness is so important to the change we all deserve- then, now and tomorrow.