IT HAPPENED TO ME: My Uterus Has Been Plotting to Kill Me My Whole Life

I was thrift shopping the next Monday afternoon when I looked down to see that I was gushing bright red blood all the way down to my ankles.
Publish date:
June 19, 2015
reproductive health, Embolization, AVM

I've never planned to have children, and I generally take every precaution I can to avoid it.

I know, I know -- everyone swears they took their pill, but avoidance of pregnancy at any cost had practically become a part time job for me. Still, I ended up pregnant.

At the women's health center, the nurses joked and called me "Fertile Myrtle," a nickname I inherited from my mother who also got pregnant on the same birth control pill (with twins!).

The procedure went as smoothly as it could have. They inserted an IUD. I healed more quickly than expected; I had no bleeding for six days after, and then the spotting started.

Everyone at the health center assured me this was normal, and that some women spot every day for over a month. I felt a little like I was being a nuisance, calling each time a new symptom popped up. I became convinced I was Googling myself into hypochondria.

Four weeks post-procedure, I was feeling weird, dizzy, and off-balance. Back-breaking cramps kept me up into the wee hours, and after 30 hard-earned minutes of passed-out bliss, I awoke in a puddle of my own bright red blood on the sofa.

I panicked, made an unweildy pad-diaper and put in a tampon. Not ten minutes later, I felt blood seeping out of me again. I had soaked through a super tampon and two pads. I drove myself immediately to urgent care, where they referred me to the ER. I sat in the waiting room for an hour, during which the bleeding suddenly stopped.

After a pelvic exam and an ultrasound by a woman who kept apologizing because she hadn't used this particular machine before and she "didn't know the buttons," I was released. No problems detected. Probably just an unusual period, or buildup, or something else, but it must've been related to the abortion, they assured me. I felt better.

The feeling was short-lived. I ended up in the ER on a Friday night during a date. My female physician's assistant and nurse immediately got me help for my pain, and rushed me to ultrasound, where, to my dismay, a tech in training slapped some lube on me and loudly proclaimed she couldn't find my left ovary. I did not feel particularly reassured at this point.

The results came back inconclusive, but my PA and nurse were concerned, so the PA suggested that I stay overnight and have an exploratory laparoscopy just to confirm that I didn't have adhesions or a perforation in my uterus. The next morning, a doctor I had never met flipped on the lights, told me I most likely had a uterine perforation, and that it would (probably) heal on its own. Since I had been in the ER so frequently during the past two weeks with invisible symptoms, I was labeled a drug-seeker and was being given 200 mg tabs of ibuprofen for what I later learned were equivalent to labor contractions.

He discharged me within half an hour of waking me up. Each question I asked about the exploratory procedure, he dismissed with confidence. He told me that it's not unusual for women to have residual concerns after they have "a procedure" and that my body would heal itself and I should let it do its job.

I felt alright. I thought maybe he was right--I seemed to be out of the woods at this point. I had no symptoms—until three days later.

A final ER visit revealed that I had an extremely rare condition called a uterine arteriovenous malformation. A gynecologist thankfully took a second look at my ultrasound and said that my uterus looked a little more vascular than it should, and a follow up appointment confirmed the diagnosis.

AVMs, as they're called, are usually found in the brain and spine and heart. Uterine AVMs are so rare that there have only been 100 documented cases in the last century. It is technically a congenital defect, but it's not hereditary.

It's basically a murderous spaghetti tangle of malformed blood vessels that go straight from arteries to being veins. Since there are no arterioles or capillaries between them, hardly any oxygen is absorbed and the pressure is equivalent to hooking up a garden hose to a tube made out of tissue paper.

You know how Alanis Morissette said that life has a funny way of helping you out? The dilation and curettage procedure a month before had weakened my uterus enough to reveal this ticking time bomb just waiting to rupture and cause me to bleed out. I was stable for now so we scheduled an embolization procedure to cut off the blood supply to the AVM and hopefully kill it before it killed me.

I was thrift shopping the next Monday afternoon at about 3:15 when I suddenly felt like I had wet myself. Horribly embarrassed and shocked, I looked down to see that I was gushing bright red blood all the way down to my ankles. The old ladies at the register were horrified, gave me an old sweater and told me to keep it, and I ran out the door to my car where I thankfully had a roll of paper towels at my disposal.

I unrolled the whole thing, trying to staunch the bleeding enough that I could drive, or move, or walk, or anything. I felt dizzy and rested my head on the steering wheel for a moment to kind of steady myself and catch my breath. I tried to dial 911 but couldn't even see my phone or make my fingers work properly.

I closed my eyes for a moment, and when I opened them, it was 3:56. It seemed to me that I had only blinked. To my horror, blood and clots the size of my fist had soaked through my clothes, through the entire roll of towels that I had folded up, and through to my car seat, and the whole mess was running down my legs to the floor of my car.

I thought to myself, "When I die in this Hospice thrift shop parking lot, they won't even be able to take my clothes for donation." I rallied, though. They say that happens when you're in danger, or when your body is shutting down. I suddenly became very alert, and realized that I was only 3/4 of a mile from the hospital. Naturally, like anyone suffering massive blood loss should, I sped to the ER, dumped my car in the valet, and stumbled in, squeaking across the floor with bloody footprints.

Horrified, the attendants asked my basics as they wheeled me back to a procedure room and hooked me up to all sorts of machines that started beeping angrily as soon as they were attached.

No one could get an IV in me at first because my blood pressure was so low. I was tachycardic, could hardly say my own name, and a man in a scrub cap had cut my shirt off and had defibrillator paddles in his hands. When a scrub nurse took my hand and kindly asked me if there was anyone they should call, I knew I was in serious trouble. It was hazy, but I heard a radiologist say something about groin catheterization, embolization, ablation. I somehow came to on the radiology operating table, after being given fluids and drugs to help stabilize me. They couldn't put me under general anasthesia because I was so weak and they were unsure if I'd eaten recently and apparently didn't want to add the chance of choking on my own vomit to the list of things that might kill me that day.

Waking up with one's limbs strapped down and holes in one's abdomen is not exactly on the list of things I would recommend to anyone that would like to remain nightmare-free for the rest of ever. To say it was painful would not come close to doing it justice, and that was under the influence of several narcotics and sedatives. Eventually, I passed out, then woke up screaming, sweating, cursing, and crying, and copious amounts of Dilaudid thankfully knocked me out until the pain lowered to a tolerable degree.

I remained in the hospital for several days so that my doctors could make sure there was no necrosis to my uterus, and to manage the pain. Thanks to a morphine drip and pain pills, I spent five days segueing from normal conversations about how I was doing to trippy stories about about piatas and bookmarks and other such nonsense to my various visitors. I am sure I will never live it down.

I remained hospitalized to see if I'd have to have another operation; if the embolization had failed, it was time for a hysterectomy, which is the ultimate treatment for my particular AVM.

Somehow, I am lucky enough that the AVM seems to be dying with no necrosis to my uterus, and I am writing to you from the comfort of home, in minimal pain a week and a half later, taking a life lesson from this critter:

I should be AVM-free for life, and I am forever grateful for that doctor who decided to take a second look just in case. Always advocate for your health, and if something doesn't feel right, speak up—it could truly save your life.