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.