When I walked out of the rural, one-room doctor’s office in my hometown, my mind turned over and over. It was 2003 and I was 18. My doctor had just told me I had HPV and was at risk of cervical cancer. I would need follow-up appointments and possibly painful, invasive procedures. I looked up at my mother’s worried face. How could I put her through this? HPV is an STD. I’m not promiscuous. How did this happen?
I felt sick and afraid and so ashamed.
That appointment was the first of many over the following two years, during my freshman and sophomore years of college. I had to have a Pap Smear every three months. When my cells continued to come back abnormal, the doctor moved on to biopsies and then colposcopies. Fortunately, my doctor was kind, empathetic, and as gentle as she could be, but the procedures were invasive. They ranged from uncomfortable to excruciating.
My supportive mom drove two hours north to be with me in the clinic when she could. She sat patiently in the waiting room while I lay on a paper sheet, naked from the waist down and in a spread eagle position, waiting for the cold press of metal on my most intimate places. Then we’d wait for the biopsy, or worse, the colposcopy. There were snicks of pain and then deep cramping. All I could do was grit my teeth, clench the paper sheets in pale fists, and refuse to cry. Because after all, I brought this on myself. I wore a pad for three days after as the dark, painful discharge reminded me what was happening in my teenage body.
In the early 2000s, the science surrounding cervical cancer began to change while the connections between HPV and cervical cancer became more understood. Overall, this connection between HPV and cervical cancer was a big, positive step for women. However, it also led to the stigmatization of cervical cancer, since HPV is linked to sexual transmission. When my doctor finally prescribed the LEEP procedure (Loop Electrosurgical Excision Procedure), I was both relieved and terrified. The procedure sounded painful and intrusive, but it would also probably mean an end to so much of my pain if it worked. To back up: a LEEP operation is when an electrical loop is used to take off the top layer of abnormal cells along the top of the cervix.
In my research, the descriptions of these procedures were mundane and used terms like “relatively painless.” In my experience, it’s more akin to a violation than anything else. When the large, numbing needle was inserted between my thighs it was like something out of a comedy movie, but the pain inside was real and instantaneous. When the doctor deemed me numb enough, she had me lay my head back, eyes closed. I took deep breaths as she advised, and the nurse took my hand gently. The LEEP machinery hummed and pain blossomed outward in a deep crimson cramp that brought tears to my eyes. I moaned but refused to open my lips to the sound.
Back in 2003, I had no one to talk to about how I was feeling, despite my experience being a fairly common one. In a 2003-2006 analysis of women in the U.S. ages 14-59, Dr. Susan Hariri, an epidemiologist at the CDC, and her team found that at least half of the women studied were infected with at least one of 37 types of genital HPV. In fact, nearly everyone will get HPV at some point in their lives, according to the CDC.
But I, like many women, carry the trauma from that experience within me. The body never forgets pain. This is why when doctors sliced me open for my C-section over a decade after my LEEP operation—and the blood flowed from that same place between my thighs—I felt the shadow of hurt again from a sharp instrument inside me and paper sheets beneath my back. And when my doctor recently suggested an ablation to help with my period pain after I’d just finished explaining—woman to woman—my trauma to her, I was hurt that she couldn’t understand the old pain that still rests in me.
I’m healed physically, but every time I lay down in a doctor’s office and open my legs, the memory of pain induces anxiety and makes it hard to breathe. I consciously unclench my fists and take a deep breath. And then another. I’ve learned it hurts less if you relax.
With the advent of the HPV vaccine, there’s been more conversation surrounding HPV in general (and even some controversy around potentially requiring the vaccine in young people of a certain age). However, much of the language surrounding HPV fails to mention what a high-risk HPV diagnosis might mean for the person being diagnosed. There is still very little open conversation about the trauma women have to withstand when subjected to multiple necessary Pap Smears, biopsies, colposcopies, etc.
I’ve spoken with dozens of women who struggled through experiences similar to my own, feeling just as isolated and alone in their trauma and hardship. If you Google “HPV,” there is only one search result on the first page that mentions anything about supporting people with HPV. All of the other results are purely informational, and many of them are frustratingly confusing. In the time I spent dealing with my HPV diagnosis, I never felt like I had a clear handle on exactly what HPV was, exactly what was going on with my body, whether I was going to get cervical cancer, or whether it was a forever diagnosis.
Instead, each appointment I had turned into fresh trauma over a barely healed psychological (and to some degree, physical) wound. I believe that if I had a better understanding of what to expect (from others who had gone through it before), the trauma of the experience could have been far less severe.
It’s my hope that in the future, platforms (like Diem!) will offer a safe place for women to gain information and support. I believe there is real power in the sharing of our stories, and within that broader spectrum, a shared space of healing.