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Click, click, click.
The clock in my OB/GYN’s office was mocking me.
Click, click, click.
At any moment I thought this might kill me.
For over a year, I knew something was wrong. I had terrible migraines that zapped through my skull, I got dizzy when I stood up, and during my period I felt like I was being ripped apart from the inside. Every month, my husband offered to take me to the emergency room when I was writhing in pain, but I usually resisted, assuming he would just ignore me because periods are painful.
It turns out my periods aren’t so painful after all. I’ve grown peach-sized cysts on my ovaries and an even larger fibroid behind my uterus. The urgent care doctor said I needed to see an OB-GYN. I’d probably need a hysterectomy, she said.
“Are you not going to have any more children?” she asked.
Ten minutes earlier I had told her that I still didn’t have children.
I’m 33 years old. My husband, Jonathan, and I married in 2022 after five years of dating. This was the year we knew we wanted to start a family, so the doctor’s words especially hit home.
My body was frozen, but my mind was racing. What does this mean? Am I in danger? She said hysterectomy. I must be in danger.
That was in January. Yesterday, we partnered with the Journalism and Women’s Symposium to publish the second installment of our series on maternal and child health in the Texas Panhandle. My reporting paints a grim picture for women living up north, in and around Amarillo, where access to medical care is difficult.
The same can be said for Lubbock, on the South Plains, the place I’ve always called home: My own reproductive health was on the verge of becoming an emergency while I was working on that project.
My experience has illuminated a little bit of everything that’s wrong with our health care system, from how expensive it is to how difficult it is to get medical help. Uterine tumors like fibroids are common, affecting 26 million women in the U.S., more so women of color. And up to 77% of women of childbearing age develop fibroids. But many women… Not enough Public education and research.
For the rest of the day, my phone was on fire as I called nearly every OB-GYN in Lubbock. I told them the size of both of my tumors, and cried while on hold. Some weren’t accepting new patients, others said my condition wasn’t serious enough yet, and some had waiting lists that extended to 2025.
There was no time for that.
Finally, I found a gynaecological nurse who would examine me and refer me to a doctor if necessary. It was an extra step, but I wanted to go to the hospital anyway. A month passed between my diagnosis and seeing a new doctor. It was the end of February. Each day felt longer.
She got straight to the point: cysts are dangerous. At any time, an ovary could flip or twist, which could result in loss of an ovary or, in rare cases, infertility. The cyst had to be removed.
Then I had fibroids. They were the size of a grapefruit, but tolerable. If they removed the cysts but left the fibroids, there was no guarantee the pain would go away. This option would have meant more extensive abdominal surgery and a longer, more difficult recovery.
I scheduled surgery to remove both. My doctor had scheduled the surgery in six weeks. I would remain forever tied to the cysts. Intrusive thoughts swirled in my head. What if the cysts turn over? What if they burst? My internet search history reflected my fears. “Can a cyst cause my ovaries to burst?”
Words like “common,” “harmless,” and “no treatment” weighed heavily on me. The people attacking me were huge. I was one of the 8% of women who develop large cysts that require treatment.
I won the lottery, which I never wanted to buy.
I scrolled endlessly through social media, looking for other women’s stories. Some women with larger fibroids and cysts than me commented that they still couldn’t afford the surgery. I felt a bit of survivor’s guilt. For many, medical care is debt versus health, and some people don’t have a choice. I could split the $2,600 I have to pay up front across two credit cards and languish in interest later.
A few days after scheduling, I got a call from my doctor’s office informing me that my surgery had been postponed until the following week. I was the first to get the call because other people had canceled.
I was far from accepting that my body was betraying me, and I was frustrated with myself. I’d been reporting on health care for years, but I’d fallen into the same trap as so many of the people I’d written about.
Are there urgent health issues due to neglecting routine care? Yes. Are there long wait times because there are more patients than providers in my area? Yes. Are you surprised at the cost of getting your health back? Yes.
It was a vicious cycle I couldn’t escape. I was trapped in anger, close to depression, and nowhere near acceptance.
By the morning of my surgery, my anger had given way to some resolve. I checked in, reluctantly paid $100 in mounting hospital bills, and tried to keep calm while my husband, parents, and sister distracted me. My surgeon stopped by my room to remind me she’s done this surgery hundreds of times. She sounded confident. I was terrified.
Bright Easter bunnies were showing the way along the hall walls to the surgery center, and I wondered if it was too late to turn back now.
Then, my eyelids started to get heavy from the anesthesia, and I finally calmed down.
A few hours later, I woke up; a small blue pillow, sewn by a local church, had been placed over my abdomen. I moved it and felt the bandages covering a seven-inch cut in my lower abdomen.
The surgery went as planned. She removed everything, found no tumor, and took pictures in case I wanted to see. I did. The fibroids looked anatomically like a heart. The cysts I was so scared of looked like water balloons. The nurse warned me that I would feel pain once the effects of the injections that paralyze my stomach muscles wore off.
I told myself to breathe. It’s over.
But the truth is, I don’t know if this will ever really end. I went into depression during my first period after surgery. It was the most painful thing I’ve ever been through in my life. My body hurt every time I stood up, walked around, coughed. I wondered if all the pain that came with surgery and recovery was worth it.
Then there’s the scar. It’s not like the scars I have on my arm from rubbing it against the trunk of a car as a teenager. It’s not like a cat scratch. It’s dark and sensitive to the touch. When I see it, it brings back all that experience.
Now, months later, it’s a good reminder of how I survived something that could have destroyed me.
Looking back on the eight weeks between diagnosis and surgery, I’m proud of how I managed to stay calm, write, and prepare while knowing what was brewing inside of me. Friends who know my love of horror movies joke that now that I’ve survived getting my disemboweled and can tell the tale, I’m a bona fide scream queen.
Looking back, all the charges are frustrating. Some of the charges included $37 to put a needle in a vein to take a blood sample and $11 for each ibuprofen tablet. I was charged for every minute I was on the operating table after the first 30 minutes of surgery. In the recovery room, I was charged for every minute after the first 15 minutes until the anesthesia wore off. Before insurance, the surgery cost nearly $31,000. With insurance, my copayments were nearly $5,000.
It feels surreal to now be learning about the flaws in our health care system firsthand instead of hearing about them from others. I still get sudden bouts of pain, but they’re not as intense as they used to be. Any signs of change in my body, like my hair not growing back or the dizziness returning, will keep me worrying that something is regrowing.
All I can do is go to the annual screenings and stay ahead of the curve.
Big news: Director and writer Richard Linklater; President and CEO of NPR Catherine MaherU.S. House of Representatives Pete AguilarCalifornia Democrat, and Lucy Baines Johnson Take to the stage Texas Tribune FestivalIt will be held September 5-7 in downtown Austin. Buy your tickets now!
