Welp, I have REALLY broken my goal of blogging once a day this time, haven’t I? But it’s the beginning of a new week, so let’s start fresh. On January 30th, I was working on a post about American Horror Story: Coven and how disappointed I was with the season, but the next day something really big happened to me. I wanted to write about it all weekend but I was so busy getting ready for a Super Bowl party that I never got around to it, and then I left to travel for work for the entire week, put in long hours there and just got back last night. So instead of recapping what’s been going on in the last week + of my life, I’m going to focus what happened to me on Friday, January 31. But first, a little backstory.
In 2011 I was young, much more naive than I thought and in love with a man I hoped to marry. Like many things in life, it didn’t work out. I was heartbroken, devastated… and then a little less than two weeks after we broke up I found out I had an abnormal pap smear. We’d been together just shy of a year; I’d had a clean pap right before we started dating and got my yearly pap right before it ended. The results came in at a terrible time. He had dumped me over the phone, out of the blue, saying that he was incapable of loving me (this, mind you, only a few weeks after giving me a Valentine’s Day card that called me his soul mate).
I went to the doctor that day nervous, but not overly anxious. I had no symptoms of STDs that I could see, I’d been with only the one person all year and was very confident that, while he might not have ever loved me, he hadn’t cheated. Google said there could be plenty of reasons for abnormal paps, so I figured I would probably just need another pap and see what the results of that one would be.
When I got to the office, they escorted me into a room that was a lot different than the typical exam room. The nurse told me to strip from the waist down, put a sheet over my lap and sit and wait for the doctor. The chair was odd, with a short seat and tall back. I sat and waited. My doctor came in and breezily gave me the news: I had HPV. High risk HPV to be exact. She said this put me at risk for cervical cancer. She said I should immediately get the Gardasil shots (I never had before because it wasn’t recommended for women until after I’d gone off my mom’s health insurance and I didn’t get any of my own until mid-2010) and I’d be getting a colposcopy today.
She tilted the chair up and back, so that I was hanging at about a 30° angle with my head tilted down and my feet up by her head. I struggled to hold in my sobs. I had kept my phone in my hands and was frantically texting my best girl friends and my sister. Most were shocked. Only one of my friends had had HPV herself, and was trying to calm me down. The texting was helping a bit, as it distracted me from what was physically happening. I didn’t get a good look of course, but this is what it felt like: my doctor misted me with some sort of spray, then insert a long tube inside of me. A nurse came in to help her with the biopsies. Biopsies. This morning I didn’t know what my abnormal pap meant and now I’m getting biopsied. She put what seemed like long scissors inside of me and asked me to cough. When I coughed, she cut a piece of infected tissue off, pulled it out and placed it in an open container the nurse held toward her. She did this again.
After she lowered me back, she gave me the largest pad I’d ever seen and warned me that I might experience some bleeding. She also told me that I’d receive a letter if the samples were negative and a call if they were positive for pre-cancerous cells. She didn’t give me any pamphlets or anything describing what was happening to my body. I was left with Google and my fears.
The first thing I did was call my mom. She calmed me down, and started looking up facts. Almost every sexually active person will get one form of HPV or another in their life. Many people never know they’re infected, particularly men, since there’s no way to test them for it. You can get it even if you’re always using a condom. There’s high risk (may lead to cervical cancer) and low risk (genital warts). I was glad I didn’t have genital warts.
After I’d calmed down over the course of a couple days, I called my ex. I figured it was only the right thing to do, since he had been the carrier in the first place. It was so difficult. We hadn’t spoken since the breakup, and I really wasn’t ready to speak to him at all at that point. I wasn’t accusatory, I simply told him what had happened, choking back tears, that I had high risk HPV, meaning I had the potential to develop cervical cancer. I said that he was a carrier, but guys couldn’t get tested. “I know,” he said, “I’ve asked to be tested before.”
I sat on the phone in silence for a few seconds and then quickly ended the conversation. I didn’t want to get into an argument about just why he would be asking to be tested for HPV (the logical reason, in my mind, being that a former girlfriend had tested positive). I didn’t want to start that. It wouldn’t change what was happening to my body. He made me promise to update him when I got the results back and we hung up.
My letter came two weeks or so later, letting me know that my samples were negative, but that I needed to schedule another colposcopy in six months. The hardest part in those first few weeks was talking about it to friends. I had the one-two punch of being dumped and getting this diagnosis and my friends wanted to understand just why I was taking everything so hard. Many people recoiled, like they thought I’d gotten HIV instead of HPV. I didn’t experience too much slut shaming, but I definitely worried about it. I had never slept around in my life. For God’s sake, I had waited until my 20s to lose my virginity. I was always the kind of person who wouldn’t even go out with someone for more than a single date, maybe two, if I didn’t feel a really strong connection. And there I was, 25, and, in my mind, ruined.
I felt like I had been punished. Punished for loving the wrong person, punished for having unprotected sex (even though I was on the pill and in a serious, committed relationship), punished for being naive. People tried to tell me I was crazy for thinking that way, but it doesn’t change the deep, resonating feeling that they’re the ones who are wrong, and that you failed to be perfect, so your body is failing you. It’s irrational, I know, but even now getting back into the mind zone to write this, I remember how true it felt.
Six months passed by. The second colposcopy was way worse than the first. I think the pain from the biopsies the first time was dulled by my shock. This time, knowing what to expect, I felt it all. A week later, just after 5pm, I got a call from a number I didn’t know, so I let it go to voicemail. When I checked the message, it was my doctor, asking me to call back. My heart dropped. A letter for negative, a call for positive, I remembered. I frantically dialed my doctor back, but since it was after 5 it went directly to voicemail. I couldn’t reach anyone to connect me to my doctor, even though she had called me only 90 seconds earlier.
I think I saw spots. I was frantic. I called my mom sobbing (wow, I cry a lot in this story), convinced I had cancer. Convinced I was barren. Convinced my entire cervix had to be removed. She calmed me down, but even she couldn’t keep the worry out of her voice. I vomited. The worry stayed with me all weekend, strapped to me like a dog pulling a sled. It weighed on me. I tried to channel my anxiety into anger–I mean, WHO calls and leaves a voicemail like that for their patient after 5pm on a Friday?! When Monday morning finally came after three sleepless nights, I called my doctor. She was at another branch that day, but they would give her the message. Great, I thought, just what I need: more time to worry.
When she called me back she told me that my sample had been tested, and they could not rule out dysplasia. It didn’t test positive for it, but it didn’t rule it out. She wanted to let me know they were sending it to another testing facility. So basically: no news. I looked up what a dysplasia diagnosis meant, and it meant a LEEP. Oh boy, did I not want a LEEP. What it basically means is that they cut away an entire layer of your cervix, and that can make it incredibly difficult for some women to have an embryo attach. Fuck. More worrying.
Luckily the letter came a week or so later letting me know the samples were negative once again. After that, the colposcopies kind of blended into each other. I learned to take ibuprofen before I went to help numb the pain. There was the time I didn’t stop bleeding for a full day and the time I had such bad cramps I could do nothing but curl up in the fetal position and try to sleep through the pain. 90% of HPV infections go away by themselves within 2 years. Well I’m part of the 10%. Two years came and went, and still every six months I had to get shit cut out of me.
I had my latest colposcopy last month, almost exactly three years after I got that abnormal pap. After she lowered me down, another two biopsies out, I said, “I thought HPV usually went away in two years.” She nodded. “It’s been three for me.”
Again she nodded. “You have a very persistent case.” Silently I started crying. She must have seen my tears as often as she saw my vagina in the last three years. “You’re still so young,” she continued, “I don’t want to have to do surgery just yet. We’re going to keep up with this and we just have to watch it very carefully.” She handed me another Madam Maxime-sized pad and left.
Last Friday I was working from home when the mail came. My landlord likes to slip it under my door when he brings it in. I could tell from the envelopes alone that I had received my pay stub, a free room offer from a casino (yup, Ems likes to gamble) and that requisite letter from my doctor’s office. I opened it without a thought, expecting to see the normal request for a follow up visit in 6 months. I looked down for confirmation, not even reading the whole thing, when I noticed something strange. It said one year, not 6 months. My eyes flickered to the top of the page. I read it once, twice, three times. Then I started screaming. I was clear. I needed to schedule an appointment for a regular pap one year from now. I cried, of course. I called my mom. I texted my sister and my best friends. I vowed to frame the letter from the doctor (don’t worry, I won’t be). It was over.
Why am I writing this now? Because I had no one to turn to when I was diagnosed who really knew what I was going through. For as common as it is, I only had one girlfriend ever be diagnosed (well, that I know about at least), and she was so scared she didn’t even schedule a colposcopy. She actually changed doctors and didn’t go back for another pap for a year and a half, and then was told her pap was normal. She never had a single colpo. Lucky bitch.
Those feelings I was having were real, if not completely sane. HPV is so common, but no one really talks about it still, and I felt completely alone. But I’m happy to talk about my experiences. If you need a stranger that you can completely trust, please reach out to me (firstname.lastname@example.org) anytime. It’s a painful process, but stats don’t lie, and so few HPV cases actually result in a cancer diagnosis, particularly in people in the first half of their life. You can still have sex with HPV. Condoms do lower the chance of transmission, although they cannot fully protect from it, and once your partner has the strain of HPV you have, you can’t continually pass it back and forth to each other. It has nothing to do with how many sexual partners you’ve had. You can get HPV if you’ve only had sex with one person your entire life. You can never know you’ve contracted it or never have any symptoms.
Don’t worry. Well, worry all you want, but it won’t do any good (believe me: I’m a First Class Worrier). Trust your body. Think good thoughts. Don’t jump to conclusions, and don’t fret about the future. Take it six months at a time.