HPV, Pre-cancerous Cells, and Me

August 8th, 2019

Two and a half months ago, I scheduled an appointment at the reproductive health clinic to have an overdue pap done. I also was excited to get my first HPV vaccine thanks to the CDC’s age limit changes last winter, and I needed a pap, also overdue by half a year. I was worried they wouldn’t let me do it all at once or that it would be overwhelming to do all of that at once but nothing else.

The appointment went as well as it could have save for switching to Kyleena (they no longer keep Mirena in stock), and my cervix being more sensitive than ever before. My first two IUDs were a breeze, but I practically levitated off of the table this time around.

I left feeling accomplished and with instructions to come back in 5 weeks later for IUD check and my second vaccine. I was honestly a little surprised to receive a phone call and already anxious as I listened to my voice mail. People who have gone through paps understand why: no news is good news. The news? My pap came back normal (false negatives are apparently common enough, however), and positive for HPV-16, one of the high-risk cancer-causing strains.

Honestly? I didn’t take it well. This year has already been so difficult with my sick cats, my dramatic family, my tight money, my bodily injuries. It all so consistently kept coming. The day after the bad news, I got a cold sore. Stress: 1, immune system: 0.

They wanted me to come back in for a colposcopy and biopsy, procedures I’d had done over a decade prior when I was first diagnosed with HPV. Knowing that the virus can resurface in time of stress, I wondered if that meant it was the same one. I made a few phone calls and contacted my ex-husband for the first in years to try to get information from the military clinic that had last treated me. As it turned out, they didn’t have any answers, so I needn’t have contacted him.

This all brought all the feelings I had after my first diagnosis. My ex had cheated on me and an abnormal pap indicated HPV. Except.. the doctors didn’t say that initially. They just told me to come back for monitoring. It was at a subsequent appointment when they mentioned me having HPV in passing. I was so shocked because this was the first I had heard of it. I kept a straight face but cried as I left and walked to the bus stop.

Two months ago I was dealing with the same thing and possibly still for the same reason. I resigned myself to not knowing, however, and went to the biopsy, which I scheduled for the next week to get it over with. Fortunately the terrible cramping and bloating I’d experienced after the IUD insertion had stopped on the morning of my biopsy. I am not sure I would have been able to handle both and was shocked; my first two were relatively easy!

The nurse practitioner who handles those was different from the gentle provider I’d had before. She’s rough in technique and demeanor. She’s a bit older and perhaps understands how much women can take, but I’ve heard from friends who have left her office in tears. When she later gave me my second Gardasil injection, she didn’t so much insert the needle as she did punch me with it.

My cervical discomfort remained despite taking more ibuprofen than I ever had before — so much, in fact, that I got home and developed a temporary case of tinnitus. HPV and hearing loss? Great!

I had to sign a waiver that they wouldn’t replace my IUD if it came out during the procedure, knowing that I wouldn’t be able to afford a new one if that happened. During the biopsy, the NP noted three places she wanted to sample and did so. She commented that the cell abnormalities were mild, and my fears were somewhat assuaged. I thought I could perhaps just get away with monitoring and not need additional procedures.

I can be a bit of a bleeder, and she struggled to staunch the bleeding with Monsel’s Solution. When it finally stopped, I was provided a pantyliner and free to leave.

While biopsies aren’t fun, I was more annoyed by the tinnitus than anything else. Over the next week or so, I experienced discharge from the Monsel’s Solution. After the bulk of it was discharged, I began spotting and didn’t stop until last week.  But because it was generally light and I didn’t have any other negative side effects (fever, etc), I waited to mention it until my IUD checkup.

After two weeks, I went back in for my results: moderate dysplasia, not mild. Not cancer but pre-cancerous. Not healthy enough to simply monitor. Not the best-case scenario.

I had to be referred to a different provider to receive treatment, and the NP recommended a Loop Electrosurgical Excision Procedure. A LEEP is essentially electrical cauterization of the cervix. I called up the OBGYN clinic at one of the hospitals and scheduled an appointment, but it was quite far out.

During this time, I went back for my IUD check and second HPV vaccine. Ironically, the medical student who performed that was much gentler than the nurse practitioner. Of course, I wasn’t spotting that day so they couldn’t check where the blood came from. But IUD looked okay, and I received the second shot. Fortunately, there were no symptoms — the first one caused a bit of discomfort at the injection site. Once that appointment was done, I simply had to wait for my LEEP.

I had initially been nervous. There have been so many appointments this summer. I went in to see the dentist in June because of some jaw pain I’d been having for about a month only to be told that I’m clenching because of stress. Knowing that I didn’t have some terrible infection eating away at my teeth was a relief, and I’ve made a concerted effort to relax my jaw since then. I also started therapy last week. I have followup appointments for both over the next week. While I am hopeful that therapy will help, just having so many appointments makes me anxious.

But by the time my LEEP appointment rolled around, I was more annoyed at filling out so much intake paperwork than I was anxious. I strode into the hospital, asked for directions, and took the elevator to the OBGYN department. I’ve never before been called as fast as I was. Yet after taking down information and instruction me to strip from the waist down, the nurse left me alone for what must have been thirty minutes. My appointment was only scheduled for thirty minutes, and the friend who drove me was waiting on me the entire time.

The doctor entered, explained the procedure and Monsel’s solution and got to work, first fiddling with a painfully ill-fitting speculum before swapping it out for another. A grounding pad stuck to my leg, I listened to the machine turn on. They applied a numbing gel that the nurse had informed me would make my heart race, and it started almost immediately. It’s difficult to remain relaxed when your heart is beating a mile a minute. Talk about a way to trigger anxiety.

On top of that, it made my legs shake, so keeping them in the stirrups was hard enough let alone being relaxed. I found out later that the gel was a mixture of numbing agent and epinephrine to prevent too much bleeding. Aside from the racing heart, epinephrine made my mouth taste awful for several days, a side effect that I had to search.

Unfortunately, I was not completely numb when the doctor turned on the LEEP machine and started cauterizing my cervix. I was on the way but definitely felt the first touches and seized up. As the numbing agent kicked it, it became easier, but the doctor still had to remind me to relax every thirty seconds.

LEEPs are short, much shorter than the time I’d spent waiting for the doctor to even make an appearance. Even though she had to apply extra Monsel’s to stop the bleeding, which hopefully means less spotting this time around (I’ve yet to start bleeding, so who knows).

I walked out frazzled because of the epinephrine and feeling discouraged that the sample would indicate I needed to go in for another procedure. I cannot stress enough how anxious this all has made me. My sleep has been terrible, and I’ve felt all the worse knowing that stress will limit my immune system, which I need to kick into overdrive to suppress this strain of HPV so I can maybe stop worrying about getting cancer.

This whole thing has had me thinking so much about my mortality. My healthiest years are likely behind me. Injuries will be more common. Sicknesses will last longer. This was all a very real reminder of that. I couldn’t remain ignorant. But sometimes ignorance really is bliss.

The shitty thing is knowing I may be okay for now but that this all could happen again someday. I could become sick or stressed, and the virus could pop back up, wreak havoc on my body.

Like it’s already wreaked havoc on my sex life. It took weeks for me to want to masturbate after my biopsy and similarly after my LEEP. Of course, penetration was off the table, but I didn’t want to touch my clitoris. I felt betrayed by my body, dysphoric. It was alien.

On top of that, I wouldn’t want to have sex with any new partner while HPV is still active in my system. While someone who has received the vaccine wouldn’t be at risk, I don’t even want to get my hopes up only to find that a potential partner isn’t vaccinated. I don’t want to think that I could transmit a virus that can give someone cancer. That’s heavy.

All of this has led me to do a lot of mesearch — research pertaining to things about myself. I’ve actually avoided looking up things this year. I wanted to remain blissfully ignorant. It didn’t work.

What may help is knowing that my LEEP results came back good. I don’t need to go in for another procedure. I will need to schedule an exam a year after my last (next May), but I can breathe a little easier for now. I hope that my anxiety can abate, my immune system can suppress this virus, and I can get on with my life. But it’s hard not to worry, to wait for the shoe to drop. 2019 has thrown me more than a few curveballs, and while I wish I was more resilient, I keep finding myself on the lookout for more danger.

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Science of Sex: Paps Vs HPV Testing for Cervical Cancer Screening

August 1st, 2019

Pap Smears Vs HPV Testing for Cervical Cancer Screening

This month’s Science of Sex was inspired by research I was doing myself based on my own health, so this post will be a bit more anecdotal/personal than usual.

I’ve been getting Pap smears since I was 18. If I had to get, I’ve had about a dozen or so — one every year until a positive HPV result when the exams became twice yearly. After things returned to normal, I went back to annual paps. Seven years ago, the American Cancer Society changed recommendations official to three years, so my visits became less frequent. As an American, I went according to the suggested schedule because I thought it was helpful; although, I realize other countries have different recommendations. I imagine that many women, trans men, and nonbinary folks have followed a similar schedule.

I don’t know if the HPV test has always accompanied my paps, but it has a good portion of them. Combination testing is recommended for anyone over 30 as it’s believed that people in their 20s may have transitory strains of HPV that will be suppressed by the younger person’s immune system. The HPV test can now detect the very strain of HPV (13 of the highest-risk strains), which is helpful to prevent cervical cancer and benefits treating HPV itself.

Read more about HPV and the vaccine.

Imagine my surprise several months ago when my pap came back clear, but I was positive for HPV 16. For those who may not be familiar, the pap smear is a collection of cells using a swab. The swab can miss areas of the cervix where cells may be abnormal, so false negatives are possible. On top of that, false positives are also possible. Because samples are sent away to a lab where a person must identify if cells are abnormal are not, there’s a pretty high margin of error.

According to one 1996 article,

Pap smears, which can detect cancer of the cervix, are now said to have a false negative rate of 20 to 40 percent.

Things may be looking up; however. Modern paps experience false negatives been 10% and 20% of the time.

A false negative could allow abnormal cells to spread and potentially turn pre-cancerous or cancerous. However, a false positive can result in unnecessary, invasive procedures. My HPV results have led to biopsies colposcopies, which enabled doctors to examins the cells of my cervix to locate and sample abnormal cells. After finding moderately abnormal cells this time around, I was referred for a procedure known as a LEEP that involves cauterization of the cervix.

Considering that abnormal cervical cells are not uncommon and not always caused by HPV and can clear up by themselves, which could make any followup procedure unnecessary.

This leads me to the crux of this post: HPV tests alone are more accurate and better predictors of cervical cancer than paps. In fact, people have questioned how useful paps are as a tool for over two decades. Clearly, co-testing (combining both HPV testing and pap smears) is effective, but it may be effective enough to simply perform HPV testing.

However, for those people who may not routinely undergo STI screenings, the recommendation that paps should be performed less frequently may mean less frequent HPV testing as well. Because HPV testing can indicate when a person’s immune system is no longer suppressing the virus in addition to new viruses, it might be helpful to increase the recommendation for HPV testing even as paps become less frequent especially considering that the CDC now states virtually everyone who is sexually active will have HPV, and it may have gone unnoticed because of a faulty pap, or may reappear during times of a weakened immune system.

Further Reading

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