"Early April Fool's! Your Pap smear was wrong!"
April 1, 2013 10:33 PM   Subscribe

Pap smear says I have HPV. Biopsy says I don't. Which is right?

So here is the latest development in the HPV saga I didn't ask for ever. It's a follow-up because I genuinely have no idea what's going on and Google, in all its extensiveness, doesn't have much for this specific case.

I get my pap smear result back last month, and not only has it detected bad shit (LSIL, if it matters) but there's a little check/no check area that says "HPV," and it says yes. I asked if that was an HPV test and the gyno said yes; I thought that was odd because the Internet says gynos generally don't test women under 30 for HPV, but whatever. They did a colposcopy and biopsied me.

Just got the biopsy part back too, and a call from the gyno. Not only were there no precancerous cells, but she said apparently I don't have HPV either, and to just come back for another pap in 6 months. WTF?

So I guess there are three or four scenarios here:

1. The pap smear / HPV test was a false positive, and I don't have HPV.
2. The biopsy was a false negative, and I do have HPV.
3. I had HPV at the time of the pap smear but cleared it by the time of the biopsy. This seems... unlikely. Like, I know women can clear HPV and do really often, but it just seems a little too shaggy-dog to clear it the EXACT week of my biopsy. (They were about a week apart. I don't do uncertainty well.)
4. My gyno is explaining the results of either the pap or the biopsy wrong or misleadingly. (How can a biopsy also be an HPV test? I guess I haven't seen THAT set of papers yet. Does, say, CIN1 count as "no precancerous cells"?)
4.5. My gyno has no idea what she's talking about.

The same question applies: WTF do I tell people? "Hi, BTW, I may or may not have HPV. And so might you and so might everyone but I mean I literally may or may not have HPV based on which result I believe. ...To get to the train from here, you take a left?" If the biopsy is right that also means my obligation to disclose is gone (for now, at least) but if the pap is right I'm being irresponsible.

Other question: Is it worth it to get the vaccine (if I can even afford to, that is)? I'm not 26 yet but I may or may not have DQed myself. Or did I?
posted by dekathelon to Health & Fitness (19 answers total) 7 users marked this as a favorite
This is a situation where your gyno should absolutely be clarifying your results for you as much as possible.

With HPV, however, that's sometimes a bit easier said than done. Many gynos have started performing a "high-risk HPV" test that can detect certain particularly cancer-happy strains (16, 18, etc.). This test is called the "hybrid-capture" test and is performed in conjunction with the pap, but its results are typically delivered slightly separately, which can form some of the confusion. (You can have a clean pap and a positive on the hybrid-capture, for instance.)

You'll want to ask if they performed a hybrid-capture on you. Hybrid-capture can, sometimes yield a false-positive. I don't know if it's terribly likely that it yields a false-positive while you also have an LSIL on the pap, but that's because I am not a doctor nor am I your gyno.

In the mean time, let's go over your listed scenarios:
1) Possible, though a bit confusing since you had an abnormal pap simultaneously.
2) You may have some early stage HPV that isn't yet presented as part of the colposcopy.
3) No, like you say, extremely unlikely for it to "clear" like that.
4) There are, as best as I can tell, at least two and as many as four tests you had done: pap, HPV (hybrid-capture or HPV DNA test), colposcopy + biopsy. The pap came back positive. Ostensibly, the HPV test came back positive, or they indicated HPV because of the LSIL component, which is confusing and seems disingenuous. The colposcopy and the biopsy both came back negative. This is good.

Since the colposcopy and biopsy came back negative, the normal indication of "come back in six months" is accurate.

Now: you may still have HPV. You may have a high-risk strain of it. It may not yet be presenting with cells that they're able to detect yet. So they will advance your pap/colposcopy schedule and you'll have to do that every six months for awhile here. They want to make sure that they don't see a high-risk strain take root, because it can be problematic once it does. (Though it is usually an extremely slow march forward, which is why six months is the review cycle and not "EVERY WEEK A COLPOSCOPY!")

On the flip side, it's also extremely possible to have a high-risk strain lay dormant for, well, forever. Not ever present. Your immune system is keeping it at bay and that will be that. But they'll keep having you come in to see if it's presenting.

I would ask for clarification on the HPV/LSIL positives and ask especially what it means to you that you had two "positive" indications that have now been totally negated by further study. Again, this is an actual very possible result, and does happen. But it needs to be explained what it means for you, and especially what it means for you in terms of transmissibility and the like.

Regarding disclosure... technically, you likely have HPV (again, depending on the specific nature of the positives from the pap and/or separate HPV test. seek clarification there first). But so does nearly everyone. If you already have 6, 11, 16 and/or 18, the vaccine won't help with those infections. But it can stop additional strains from taking hold, so it's typically still recommended. You should be able to find a practitioner who will administer the vaccine to you, and it should be covered by your regular insurance, assuming you have insurance.

Again, I am not a doctor or a gyno or, actually, even a woman. So please take a moment to clarify with your doctor your concerns, the results, and if she believes you have HPV, along with what an appropriate disclosure strategy is.

Also remember that HPV cannot even be tested for in males, lucky us, so there's no telling if they have it, still have it, who gave it to you, if they had it already or before, or anything like that. It's also worth remembering that according to the CDC, nearly 80 million Americans are currently infected, so welcome to the club!

Please follow some of the other advice in the other thread on chilling out. This isn't HIV or even something burny like gonorrhea. It's something very-nearly-most sexually active adults in the USA already have, so it's by no means the end of the world.
posted by disillusioned at 10:58 PM on April 1, 2013 [10 favorites]

Is there a women's clinic or an std clinic near you? Go get another test done. Std clinics are free where I live, and my experience with them has been stress free and non-judgmental and very informative.

If you're confused, I don't see why you couldn't just call your OBGyn and ask her this exact question? Say you're confused, you need to know how careful you need to be with sexual partners, can you redo the more accurate of the two or both of the tests now if you need to to be clear?

It's always okay to ask for more information when you're confused about medical things. The doctors will want you to understand, especially if you're at risk of possibly spreading a disease. If your Gyno seems impatient with you about this, I think you should look for a new one. You're just trying to figure out the status of your own health and not endanger others, that's a very responsible place to be coming from.
posted by euphoria066 at 10:58 PM on April 1, 2013 [1 favorite]

I just want to add a small thing someone told me once that I liked a lot and think about often.

Getting Sick is Not Your Fault.

It never is. be that an STD, be that gingivitis, cavities, mono, the flu, food poisoning, be that HIV or Cancer or anything else really terrifying, it's not your fault. Maybe there are measures you could have taken to lessen your chances of getting it, sure, and you can try beating yourself up for that, but it still doesn't make getting sick your fault.

So, deep breaths, your new mantra is "getting sick is not my fault" and go out there and get the information you want and need, and don't spin in your own head with guilt and shame and all the other things you're feeling. Go be proactive, you'll feel so much better.
posted by euphoria066 at 12:07 AM on April 2, 2013 [5 favorites]

I agree with everything the first comment said about HPV/Pap and talking with your Gyno. Definitely ask questions and bring your research to them. Get a second opinion if you are unsure.

I recently had a similar experience so I can tell you that it's not uncommon for weird things like this to happen and you are not alone.

March 2011: Went in for my regular pap and got an abnormal result - HPV and precancerous changes.

April ish 2011: Scheduled a colposcopy with 3 biopsies, they can back with moderate to severe pre-cancerous changes. (SCARY!) Since I was at my school clinic at the time they referred me out to a new Gyno for a LEEP procedure - Don't investigate this ever if you don't need it, it's scary.

End of April ish 2011: Went in for my LEEP, did a colposcopy exam, and the doctors said, "You know what, it really looks like you have healed a lot on your own. I don't think we need to do this procedure. See your regular doctor in 6 months."

October 2011: I went in for my follow up exam, which ended up being a colposcopy with 3 more biopsies. They came back with mild changes. Therefore come back again in 6 months for a PAP.

April 2012: Went in for my 6 month follow up pap and it came back mostly clear. Therefore they told me to wait another 6 months to do a followup pap.

October 2012: I went to planned parenthood, with my history, for my followup pap and have yet to receive a call. They said they only contact you if there is a problem. My new gyno said that since I have had an abnormal pap I will have to get a pap every year, where as most people are now recommended every 3 years.

Therefore I went from having something that was extreme and needed a LEEP procedure to not needing the LEEP and going back to regular pap smears. My gyno also told me that most people carry HPV but your body fights it off. In my case I think it got a foothold because I had recently fought off 2 kidney infections. It had healed mostly in the time (about a month) between my first colposcopy and my LEEP appointment.

The main thing is to stay calm. There are may procedures that will catch and prevent any pre-cancerous cells. Keep in touch with your doctor, but don't freak out. Ask them to run the labs again if you are unsure.
posted by Crystalinne at 12:44 AM on April 2, 2013 [1 favorite]

I had squamous cells turn up in a pap about 15 years ago; the follow up and subsequent ones have been clear.
posted by brujita at 4:33 AM on April 2, 2013

The CDC recommends not testing for HPV under thirty because most women fight off the strain before then, but this is a fairly new directive and some doctors still do. There are two possibilities here: one is that you had a false positive or a wishy washy maybe on the HPV in an actual test for it and the other (maybe more likely) is that you had an abnormal pap (something that runs in my family oddly enough, the tricky cervix) and your doctor is not properly explaining that the check mark meant they want to do a colposcopy to check for HPV, not that you have it (at your age this is more likely). Either way, the colposcopy is a more rigorous test and nullifies the pap. So the correct scenarios are either 1 or 3 from your list.

Having you come back in six months instead of a year is the recommended procedure for an abnormal pap of any kind just to be sure so your doctor is right on there, however I would call and ask for clarification and if you are still not happy with the clarity with which your doctor explains everything I would make the six month appointment with someone else (ask around for a recommendation).

And no, you do not need to tell everyone you have HPV because a) you don't (ever or anymore or for right now, whatever) and b) nearly everyone in under 30 has or has had a strain of HPV at some point. If you and a monogamous partner have chosen to not use condoms after both getting tested for STDs you could tell them if you feel like it, though as disillusioned pointed out if that partner is male there is no test so he's probably who you got it from if it was ever there. Otherwise, as a free swinging single gal you just need to be vigilante about safe sex anyway so you're protecting yourself and your partners from the HPV that you may have at any given time, like most young people.

Obviously, IANAD, but just a girl who went through her twenties with a tricky cervix and access to a medical library.
posted by itsonreserve at 5:23 AM on April 2, 2013

Can you clarify? Did you have a pap which showed dysplasia and then have a biopsy to follow up? If this is the case, did you have a punch biopsy in the office or a cone biopsy in short procedure?

I'm asking because I did have repeatedly dysplastic alternating with clear paps which led to a cone biopsy to get to the bottom of the situation. Turned out I had a small carcinoma in situ, and the different pap results came from the areas of the cervix that were scraped. I also had HPV. So there might be genuine confusion if different areas of the cervix are sampled and yield different readings that appear contradictory.

My cone biopsy, done for diagnosis, was actually therapeutic, since the carcinome was removed in its entirety. I suspect that if I hadn't been at a major medical center my gyn would not have been as persistent in resolving the contradictory findings, and I would not have been as comfortable with the option of surgical biopsy. I was all of 20 years old, and the gyn was shocked at the findings. I did have issues with my cervix during later pregnancies, but I needed a second cone biopsy for recurring severe dysplasia several years later. Fortunately, I was able to conceive easily, and did carry both of my children to term.

I'd urge you to insist that your gyn explain the findings thoroughly. And if you still have questions about the findings, it is possible, even desirable, to ask for a second pathology reading by a different pathologist at a different institution. This is most easily accomplished by scheduling an appointment for a second opinion with a gyn at the new institution. It might be worthwhile to seek a second opinion at a practice in a teaching hosptial, where the new gyn can help you request that your path slides are sent to the new pathologist.
posted by citygirl at 5:44 AM on April 2, 2013

Another note about the cervical cancer/HPV connection, in case you're worried - it takes a really, really long time to get from Point HPV-Positive to Point Cancer-That-Requires-Chemo-And-Surgery-And-All-That. As in, years. And the fact that the colposcopy results are minor enough that your doctor decided "we dont need to do the LEEP after all" is a really good sign.

So even if this takes a couple months to sort out, you are not in danger of secretly having cancer that could kill you while the doctors are sorting this out. So if you have any lingering concerns about that, you need not fret.

As for why they tested you for HPV when they usually don't test people under 30 - if you have an abnormal pap smear, they automatically test you for HPV after that. Abnormal pap smears can come from a bunch of different sources -- even just stress - so that's one way they figure out whether the abnormal pap smear could Potentially Be a Thing, or whether it's just "huh, just random funkiness, we'll just keep our eye on it and wait."

IANAD either, but IAA woman who's had a couple of abnormal pap smears, a couple of colposcopies that also made doctors get confused and say "weird, this doesn't look as bad as we thought" and an HPV-positive status that two years later turned into an HPV-negative status again. (However, this was only partially good news because it was a sign that that's how long I'd been involuntarily celibate....)
posted by EmpressCallipygos at 5:45 AM on April 2, 2013

First of all, you need to talk to your doctor and have ALL of your questions answered. Make an appointment and go in, with a list, and speak with her. Ask her EVERYTHING you are asking random internet strangers.

Secondly, this internet stranger thinks that your results are that you are free and clear for now, since the biopsy is the test that follows up the questionable PAP. But again, for sure, talk to your doctor.

I just went through a whole thing with pre-cancerous cells, I had laser ablation and while I was freaked out at first, it turned out to be no big deal. (YAY!)

I'm 50.

While it's good to be concerned about your health, and to be conscientous, being all DRAMAZ and freaked out and not getting your questions answered because of the DRAMAZ...that doesn't do you any damn good at all.
posted by Ruthless Bunny at 6:02 AM on April 2, 2013 [2 favorites]

My money's on the pap smear being a false positive. They are meant to be screening test and not used for a definite diagnosis, the idea being if they are positive, you need further investigation or closer monitoring.

The diagnosis of LSIL on the basis of a pap smear is made on the basis of a bunch of cells looking a bit more weird than usual and a pathologist / cytologist are usually more inclined to overcall a diagnosis on a screening test than undercall one.

On the other hand, it's much less likely for a biopsy to be inaccurate due to the fact that more cells are sampled. They may not have specifically tested for HPV on the biopsy (it's possible to stain for high-risk HPV infected cells), which may very well be reported as having no HPV-associated cell changes. Again, false positives for HPV on pap smear is not unheard of.
posted by ianK at 6:46 AM on April 2, 2013

I have been in your exact situation.

My understanding is that the biopsy is a more rigorous test than the pap smear. If it wasn't, why would doctors order them?

I would go by what your doctor says, and what the biopsy says.

I am also of the strong opinion that this very thing is why it's not vitally important to inform every partner you ever have from this day forward that you have HPV, like it's some kind of death sentence. HPV is a pretty nebulous STI, for exactly these reasons.

Carry on living your life. You're fine. There's nothing to worry about.
posted by Sara C. at 7:31 AM on April 2, 2013

WTF do I tell people? "Hi, BTW, I may or may not have HPV. And so might you and so might everyone but I mean I literally may or may not have HPV based on which result I believe. ...To get to the train from here, you take a left?" If the biopsy is right that also means my obligation to disclose is gone (for now, at least) but if the pap is right I'm being irresponsible.

Hooo boy, do I remember going around and around in my head with those questions when I was in a similar situation years back. I remember that the maybe-future-cancer thing was way less scary to me than the disclosing-to-sex-partners-but-maybe-it's-not-necessary thing.

I never had a problem having the STD talk with partners in the past, but it turns out that was only because I could confidently say that I had never had anything. After the abnormal/normal testing debacle I was just confused, because there was no certainty about whether or not I even had HPV. They say most people in their 20s probably have it at some point, but was I more likely to have it because one test had suggested the possibility before another refuted it? And even if I was more likely than everyone else to have HPV, was my 85% really different from the 80% probability everyone else was running around with? (The stats are made up, but that was approximately my understanding of HPV prevalence in the 20-30 age bracket.)

Intellectually I felt like I didn't need to disclose that I "might" have it, because the abnormal test was probably wrong, and it's so common, and most people clear it, so it's no big deal, blah blah blah. Emotionally I felt incredibly ashamed and guilty, and couldn't imagine not warning someone that I had had an abnormal pap. In all the crazy emotions surrounding the possible diagnosis of an STD, I was thinking a lot about how if I had known one of my partners "might" have HPV, I probably wouldn't have slept with them, so whoever it was would be a terrible person if they knew and didn't tell me. And I didn't want to be a hypocrite or a terrible person, so didn't that mean I had an obligation to disclose? Clearly I would have to announce and explain this series of test results to any future partner until they ran away thinking that I'm (a) diseased and gross, or (b) a crazy hypochondriac. Or I could go with the rational approach of not disclosing, which science and the internet and the calm side of my brain were telling me was right, but I was too anxious and guilty to manage that.

Instead of disclosing or not disclosing, for several years I chose the third option of not getting into any situations where disclosure was even on the table. I didn't let anyone get close to me. Needless to say, I would absolutely not recommend that approach. After years of worrying, I actually needed therapy to sort myself out around this issue.

If you're going through anything similar and the various MeFi threads on the subject don't ease your mind, get some clarity from your doctor. Ask them directly whether this is something you should be disclosing to sexual partners. Ask them whether this series of test results indicates that you are more likely than someone with a normal Pap to transmit HPV to a partner. Do what you have to do to feel intellectually and emotionally confident that you are doing the appropriate thing, when you choose whether to tell a future partner about this stuff. FWIW, I don't think you have anything to disclose.
posted by Inconceivable! at 8:41 AM on April 2, 2013 [2 favorites]

My guess is that it was a false positive or that your body cleared it already. I don't know what the deal is with HPV but I think that with HIV testing, they throw a lot of tests together in a big batch and test the batch for HIV. If the batch tests positive, they ask everyone whose tests were included in the batch to come back in for another test. This is how my brother was led to believe that he was HIV+. Good times!

Testing again after six months is standard. Don't tell people anything until you're thinking about taking your pants off with them. I understand those who are saying you don't have to tell anyone anything but this is something that freaks you out and concerns you. I'm of the opinion that if you're thinking about taking your pants off with someone, you should be in a position where you can talk about things that freak you out and concern you with that someone. That's probably an old-fashioned perspective but it has served me well.

I got the vaccine when I was maybe 25 and monogamous. I can't say whether it "worked" but I haven't had a problematic pap since then. I just got the vaccine though because my insurance covered it and it was ungodly expensive when it first came out. The shot is only good for maybe four strains of HPV but those are the four strains that cause 95% of problems, I think. Since you don't do uncertainty well, you should probably get it. Talk to Planned Parenthood about it.
posted by kat518 at 9:07 AM on April 2, 2013

My money's on the pap smear being a false positive. They are meant to be screening test and not used for a definite diagnosis, the idea being if they are positive, you need further investigation or closer monitoring.

Yes, PAP smears are crude, early-round testing for this sort of thing.

In response to the tail end of your question: I think it's worth getting the vaccine. It protects you against four strains of high risk HPV. Unless you have all four of them - unlikely - it's worth it. But ask your doctor. I'm just a stranger on the internet.

Also, I wouldn't bother telling dudes that you may have had HPV. The situation is really unclear, and for the average guy, this information will be more confusing than helpful. For every self-righteous MeFi who claims that they don't have STD's there's a person unknowingly carrying herpes, or whatever. You're fine. Hope you've taken a chill pill re: this whole thing.
posted by ablazingsaddle at 9:21 AM on April 2, 2013

Weighing in on the disclosure/non-disclosure issue: I did disclose my status. But my own status was a hell of a lot more definitively positive than yours, and I'm also in the habit of a pre-sex health talk in general, where I also mention my HIV status and announce that "we will be using condoms anyway no matter what and that is not a negotiable point", so it was easy to just slip it in there. (I did add, though, that "yeah, technically I test positive for this, but from what my doctor told me there's a damn good chance you are too by now anyway and here's why"; and basically passed it off as just one extra reason why "Condoms Yay".) Not a single guy has balked upon hearing that.

But because you're so uncertain about your status I'd check with your doctor about whether it's even necessary. If you still really want to, try the "here's all the information" approach so he's also hearing that there's this thing, but you're negative for all these other things and oh yeah, you'll be using a condom anyway because that's just how you roll and so deal with it, and that could help.
posted by EmpressCallipygos at 9:32 AM on April 2, 2013

Congrats! You don't have anything nasty growing on your cervix! Now start relaxing already. Get the HPV vaccine to save yourself some potential added stress, and go in for a 6-month follow up if your doctor recommends it.
posted by joan_holloway at 1:19 PM on April 2, 2013

Response by poster: Thanks. I'm really confused - the whole reason I have questions in the first place is because this particular gyno is... not forthcoming with explanations, so asking to further clarify is probably off the table. (I hadn't had a gynecologist in this city since I moved so I more or less picked one at random.) I had to Google the results in the doctor's office to even begin to get a handle on what was going on. Yes, I'm seeing someone different in six months, but of course that doesn't help in this case.

Can you clarify? Did you have a pap which showed dysplasia and then have a biopsy to follow up? If this is the case, did you have a punch biopsy in the office or a cone biopsy in short procedure?

Pap showed LSIL, I got a colposcopy/biopsy as a follow-up, no repeat pap that I know of. They didn't explain what kind of biopsy it was but it hurt a lot less than what I had read (it felt like a novocaine shot, kind of) so I doubt it was a LEEP.
posted by dekathelon at 2:18 PM on April 2, 2013

Oh how I hate having an uncommunicative gynecologist! They are the worst.

Did you get any paperwork from them with lab results?
posted by ablazingsaddle at 2:51 PM on April 2, 2013

Poster wrote in comment #3456693">> Thanks. I'm really confused - the whole reason I have questions in the first place is because this particular gyno is... not forthcoming with explanations, so asking to further clarify is probably off the table.

Oh, you can push the gyn for explanations until you're fully satisfied. You're totally entitled to do so. It's just a matter of whether you want to fight that fight on principle. (He/she should want you to understand and be involved in your health. Grr.) At the very least, though, call the office and ask for a copy of your lab results. Since the gyn has already discussed them with you, this should be something that the front desk can arrange send you via mail or fax. (They probably cannot email it to you.)

Paps are not meant to be precise, they give a rough idea of what the gyn should be looking for with a colposcopy and biopsy. LSIL doesn't mean they found bad shit, it means that there were some abnormal-looking cells and that it's worth checking out further. It could be pre-cancerous cells, or it could be just some ordinary, temporary inflammation from something totally unrelated to cancer. Also, that HPV box that was checked...just a thought, was it supposed to mean yes, HPV was detected or yes, you were screened for HPV?

At the gyn, it sounds like you had a punch biopsy (more like a pinch biopsy, amirite?) and be glad that you didn't find it too terrible. Apparently this is a thing that is tolerated very, very, very differently by different women. I had the opposite experience, I was warned there may be "slight discomfort" yet I found it pretty stunningly painful.

Yes, they can do an HPV test on the tissue sampled for a biopsy. If your gyn says there's no HPV, go with that.

CIN1 corresponds to LSIL. These are two different ways of examining and categorizing abnormal cervical cells. What we're talking about here are the presence of a low-yet-detectable amount of potentially precancerous cells which are worth keeping an eye on to make sure that your immune system clears them. Like a dermatologist finding a few unexplained little red bumps or a weird-looking freckle and wanting to see you again in six months to make sure it's not changing shape or getting rashy.
posted by desuetude at 10:58 PM on April 2, 2013

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