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hpv positive

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The CDC reports that 79 million Americans have human papillomavirus and that there are 14 million new infections each year. They also state that, without the vaccine, almost every sexually active person will contract HPV at some point in their lives. Maybe you were already familiar with these figures. HPV is discussed pretty openly at this point by the medical community and those affected by it. Hey, I have HPV! I’ll tell you that, and I have several girlfriends who have told me that they have it, as well. Generally, the message surrounding it is, “It’s no big deal.” And, generally, that’s true. But it’s a bit more complicated than that.

For nearly a decade one of the cancer-causing strains of HPV has lain dormant in my body. It has been there, and now, it’s acting up, which has led to an influx of information coming my way that’s not as commonly discussed surrounding this topic. When doctors say something is “No big deal,” they are trying to give you the gift of peace of mind. They don’t want you worrying if you don’t need to. But, if you do find yourself in a position where you have to learn more because HPV does in fact become a big deal for you, you might be alarmed at how little doctors share with you surrounding all the ways HPV can play out in your lifetime. It’s anything but a straight line.

HPV positive

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It can linger in the body

If doctors test you for HPV and the test comes back positive, but your pap smear is normal, they will likely say, “Okay, you’re fine.” Or, if you have an abnormal pap smear one year, accompanied by a positive HPV test, but the following several pap smears are normal, your doctor may say everything looks okay, leading you to believe that your HPV is gone. But HPV can linger in the body. Most strains can be cleared permanently, but not everyone is lucky. If it hasn’t cleared your body, when doctors say you’re fine, it’s because your HPV isn’t presenting symptoms. It’s “inactive” at the moment. But even if you clear a certain strain, there are many others that you can contract in your lifetime.

HPV positive

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You can contract multiple strains

In my early 20s, I tested positive for one of the low-risk strains of HPV. That would be a strain that is not associated with causing cervical cancer. Now, a decade later, I’ve tested positive for one of the high-risk strains – a strain highly associated with cervical cancer.

“But I already had HPV! They found it. It wasn’t one of the high-risk strains,” I told my doctor. Doesn’t matter. As previously mentioned, you can contract multiple strains of HPV in your lifetime. That makes this PSA very important: if you have tested positive for a low-risk strain of HPV, but not a high-risk strain, it is still worth it to get the vaccine, which protects against high-risk strains.

HPV positive

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It can lay dormant for years

I’ve had one sexual partner for the last eight years. Ten years ago, I did not test positive for a high-risk strain of HPV. In the two-year gap between my doctors finding a low-risk strain, and me finding my now-husband, I had exactly two partners with whom I did not use condoms. Then, my husband. What that means is that, in all likelihood, this strain has been in me, but dormant, for at least eight years, if not ten years (up to the last time I was tested, when it was not found). Translation: get your regular pap smears because years of normal ones are no promise of anything for the long-term.

HPV positive

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It can progress very quickly

The current guidelines for women in their twenties through sixties who have had a history of normal pap smears state that pap smears are only required every few years. But, a gynecologist we interviewed recommends going in more regularly for pap smears, especially if you have, at any time, had an abnormal one. In 2018 I had a normal pap smear. I skipped my 2019 one, per guidelines. In 2020, I had an abnormal pap smear and tested positive for active high-risk HPV. That’s how quickly things changed for me. Better safe than sorry, folks.

hpv positive

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You may want annual paps

Your doctor may say you’re fine to skip pap smears for a year or two. But, if you have any anxiety surrounding the cervical cell changes that could occur within one year, listen to the gynecologist we interviewed, and get your pap smear yearly. Most insurance plans pay for an annual pap smear, and it can provide you with peace of mind. Or, possibly catch something in its very early stages. These days, it’s recommended that you have pap smears every three years if they come back normal, but just because annual screenings aren’t required doesn’t you can’t go that route.

hpv positive

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What takes things to the next level?

“Nothing needs to happen.”

Your doctor will say something like that if they find a low-risk train of HPV or if your pap smear is normal. But what is the all-elusive “thing” that needs to happen, if something were to progress? And what triggers something needing to happen? I didn’t ask these questions until things were already in motion, but I wish I had in advance. If you have an abnormal pap smear combined with testing positive for a high-risk strain of HPV, something needs to happen and it should occur sooner than later.

hpv positive

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Why does that combination matter?

What your doctor is looking for is the possibility that a high-risk strain of HPV is presenting symptoms. Symptoms, in the case of a high-risk strain, involve changes to your cervical cells. If those changes are occurring, that results in an abnormal pap smear. Remember that you can have inactive HPV. That’s not so much a concern. If you have tested positive for it, but your pap smear is normal, okay – your doctor says “Nothing needs to happen.” They know the HPV is there, but it’s not currently doing anything. If you have an abnormal pap but test negative for high-risk HPV, your doctor may want you to come back sooner for another pap, but that’s it – they’re relieved to find that HPV cannot be the cause of your cell changes because you tested negative for it. But that combination of abnormal pap smear plus high-risk HPV could mean your HPV is changing the cells on your cervix, which can put you at risk for cervical cancer.

hpv positive

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So then what?

If that unfortunate combination occurs, your doctor will order something called a colposcopy for you. The procedure closely examines your cervix, as well as your vagina and vulva, for signs of disease. What’s required of you is no different from a pap smear. You just put your feet up in the stirrups, lie back, and open your legs. Your doctor will look at your cervix with a microscope, and throw a vinegar solution on your cervix, which helps them get a good look at your cells. They may also take biopsies from the surface and inside of your cervix. This will all take about 15 minutes.

hpv positive

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How does a colposcopy feel?

Everyone’s experience can be different, but I had biopsies taken from the inside of my cervix and the cramping was severe. I was rather shocked and honestly felt a little traumatized after. This isn’t to scare anyone, but it’s important to be prepared for all possible outcomes so you aren’t disturbed. Many women with whom I’ve spoken had the same experience I did – severe cramping and a general feeling of, “Wow. I had no idea what I was in for.” Some said it was no big deal, as everyone and their experience is different.

hpv positive

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What about after the colposcopy?

There are things you should know about after-care that your doctor may or may not tell you. You may have spotting for up to a week. Something blackish will likely come out of you the following day – a solution your doctor put up there during the colposcopy. Something that sort of looks like chicken skin may also come out of you. Allow me to explain. Your doctor will likely put a liquid bandaid over the places where she took biopsies. Most people’s bodies absorb it, but if yours doesn’t, it will come out of your vagina. That’s the thing that looks like chicken skin. There is some other important after-care information you can find here.

HPV positive

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So, then what?

If you’re like many women, you may spend the next couple of weeks as a ball of nerves, waiting for your results. Meditate daily. Talk to other women who have been through this. Be gentle with yourself, and manage the stress. The waiting might be the worst part. When you get your results, a few things might occur. Your doctor might say they didn’t find anything, and you can go on about your life. Perhaps they’ll have you come in for your next pap smear sooner. They may say that one of three possible precancerous stages were identified. These will be called CINs and they are precancerous lesions affecting the cells of your cervix. There is CIN1, which is considered mild, and CIN2 and CIN3, which are considered moderate to severe. It is important to know that cervical cancer typically takes many, many years to develop, and death by it is extremely uncommon. It is one of the most preventable cancers, so if you are found to have CIN2 or CIN3 lesions, do not panic. You caught this early.

hpv positive

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If you have CIN2 or CIN3

If your doctor does find moderate to severe lesions in your cells, she will likely recommend something called a LEEP (Loop Electrosurgical Excision Procedure). You can read all about it here, but put simply, it removes the problematic cells. It is extremely effective, takes little time, and can be done with or without anesthesia. Though, many women with whom I’ve spoken who had this done without anesthesia recommend, in retrospect, going under, because it’s very important to stay still during the procedure. That can be hard to do if you’re nervous for any reason (like the reason of, oh, you know, precancerous cells being taken off your cervix).

hpv positive

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To be honest, it isn’t over yet

So, here’s the thing you should know about your LEEP before jumping to the conclusion that everything is over. A LEEP is both a treatment and a diagnostic procedure. To lay it out there, the tissue removed during your LEEP will be sent to a lab for analysis to confirm cervical cancer had not developed. So it isn’t until those results come back that you know for certain what the diagnosis is. The good news is that this procedure provides highly accurate results. Again, cervical cancer is very rare when it comes to HPV.

hpv positive

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A LEEP isn’t the end-all, be-all of treatment

A LEEP doesn’t get the HPV out of your body. You still have it, and it can come back. There are women for whom HPV causes cell changes, many times in their lives. I have a friend who has had four LEEPs. I have a friend whose lesions have hovered at CIN1 for 10 ten years. They haven’t progressed to the point where she needs a LEEP, but they also haven’t regressed, and for that reason, she gets multiple pap smears a year.

There are several factors that contribute to the likelihood that precancerous cells return, one of which is age. And if the problem persists, your doctor may order a hysterectomy. My friend who has had several LEEPs hasn’t had a hysterectomy because she wants to have more children. But if you don’t want kids, or are past your child-rearing age and your high-grade lesions return over and over again, a hysterectomy may be something your doctor recommends and something worth considering.

hpv positive

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TBH, it’s never really over

If you have a strain of high-risk HPV, you might want to mentally prepare for this being something that you have to monitor and manage throughout your life. It may not present symptoms for years at a time but then come back out of the blue. It may come back presenting more advanced lesions than the last time, or less advanced lesions. You may have to (or want to) get more frequent pap smears than most of your friends. Cervical cancer is highly preventable, but if you have high-risk HPV, that prevention is on you to do regular screenings, and follow your doctor’s recommendations for follow-up tests and procedures. After reading this, it’s easy to see how HPV can go quickly from “no big deal” to a pretty damn big deal.

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