Taking care of my gynecological health with SMA

Certain things happen when you turn 21. You come of age. You can legally drink in every state in the U.S. And, if you have a cervix, you start getting regular screenings for cervical cancer.

I didn’t know that when I turned 21. I wasn’t sexually active at the time, and studies have found that 99.7% of cervical cancer cases are caused by HPV, the most common sexually transmitted infection. But what about the remaining 0.3%?

I went through my 20s blissfully unaware of Pap smears and pelvic exams. The only reason I found out is because I started getting “preventive care overdue” notifications via MyChart. I brought it up with a provider who told me I wasn’t at risk and didn’t need to worry about it.

I was, admittedly, relieved. I’d done all sorts of research, and according to a cursory Google search, Pap smears were not fun. I went on with my life.

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A couple of years later, I was establishing care with my complex care physician, Peter Ladner. When he noted that I was overdue for a Pap smear, I told him I’d never had one. The look on his face suggested he wasn’t happy with that answer. His reply, while characteristically diplomatic, brooked no argument: Let’s revisit this omission once you’ve established care with your new general practitioner (GP).

I wasn’t too concerned; he’s endlessly conscientious, so of course he’d want me to get preventive care. I kept thinking about it, though, after my new GP also suggested I get screened, so I scheduled a consultation with a gynecologist.

Then my dad was diagnosed with colorectal cancer.

An anxiety-fueled haze

As often happens when life goes to hell, my preventive care fell to the wayside. I pushed the appointment out, thinking that surely things would calm down in three months’ time. They didn’t, and so I kept postponing, ruminating on cancer all the while.

Because I’m me, I turned a molehill into a mountain. I convinced myself that, because I’d gone nine years without a Pap smear, I’d be one of the unfortunate 0.3% with non-HPV-related cervical cancer, and that my asymptomatic case would be untreatable.

I became an expert on all things gynecology. A CT scan from early April suggested I was cancer-free — my pelvic organs were, in the radiologist’s words, unremarkable — but I struggled to trust even that. My animal brain chased itself in circles, until I finally scheduled an appointment days before I was slated to leave for the upcoming 2025 Cure SMA conference.

I spent probably two weeks in an anxiety-fueled haze. Everything was a portent of inescapable doom. Everyone in my life laughed it off, but in a kind, forgivable way. Your dad just had cancer, they seemed to say. Of course you think you have it, too.

The day arrived without fanfare. I drove the 50 minutes to downtown Minneapolis, running through all the different scenarios. My greatest fear was that my parents and I would make it halfway to Anaheim, California, only to get bad news. But I didn’t have much of a choice, so I put on my big-girl pants and played at indwelling Zen.

Like Ladner, the gynecologist brooked no argument. You need to get screened. It doesn’t matter if you’re sexually active or not.

I was prepared to go through the whole rigamarole, complete with the pelvic exam and dreaded speculum. But the gynecologist presented me with an alternative: a less-invasive, self-test option. It wasn’t the “gold standard” of cervical cancer screening, as she so aptly put it, but last year the U.S. Food and Drug Administration approved the test for in-clinic and at-home uses, so it was legitimate. I tipped my chair back and held my breath.

The vaginal sample was nothing. I barely felt it. I’d hyped it up so much in my head that it was over before I realized. The results would take anywhere from seven to 10 business days. Spoiled as I am by next-day shipping, having to wait over a week to know if I had cervical cancer seemed cruel.

Exactly a week later, I woke up to a letter in my MyChart. I was so relieved that my smile broke my face.

“Pap smear was negative,” I texted my parents. “Let’s go Cali!”

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I’m participating in the “Storytellers with SMA” panel at this year’s conference alongside our very own Kevin Schaefer! Join us at 2:30 p.m. on Saturday, June 28, at the Disneyland Hotel. Stick around afterward to say hello — I’d love to see you!

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.