Tuesday, March 23, 2010

An HPV Story

Once upon a time there was a mommy who sat in a sunny nursery on a quiet morning rocking a newborn baby who was almost asleep. The phone beside her rang and she answered it without disturbing her nursing baby. It was the birthing center at which the baby was born. Her midwife had given her a pap smear at her 6 week follow-up visit and the pap was flagged by the lab as abnormal. The results had been faxed to her family doctor and the mommy was supposed to go see him so that he could explain it all to her.

"Don't worry about it though," the receptionist on the phone said, "it's probably nothing. We get abnormal pap results all the time and they're usually nothing. They make mistakes with these things all the time."

The mommy decided not to worry. She wasn't a worrier. And when she looked down at the plump, rosy, nursing baby in her arms the whole notion of there being anything at all wrong with her womanly parts seemed outrageous.

When she went to see her family doctor he explained that she had an HPV infection. He said that there are hundreds of types of HPV infections and most are harmless but some cause cancer so they had to check it out. He was going to refer her to a specialist.

"Don't worry about it though," he reassured her, "it's extremely unlikely that anything is wrong with you. There's less than a one in one hundred chance that it's anything like cancer. It's probably nothing and can be cleared up easily." 

And that, dear Readers, is how a long and painful medical saga began that I am about to chronicle here.

This is Part I: An HPV Story.




I know, right? Fun for you!

Well, dammit, one year and a half after this phone call I've finally made it to the other side of this ordeal and I want to talk about it. I want to share my story with other women and girls who will say, "me too."

I cried a lot at that first visit to my family doctor.
He was mystified by my tears.

"Why, HPV is terribly common," he assured me, "and nothing at all to be upset about."

I wanted to explain to him that there just couldn't possibly be anything wrong with me because the tiniest, most precious thing on Earth utterly depends on me. He, my newborn, is at home right now where his eyes are slowly turning from baby blue to brown. He is my chubby wubbers. And ohmigod. I also have a daughter. She can say things like "Parasaurolophus" even though she's only two. She says it wrong though, she says, "ParasaurolophAlus," and gets really belligerent when corrected.

And she needs me too.

It's hard on a wee girl to become a big sister, you know? I can't tell you how impossibly small she looks when she sits on our big toilet and holds herself up with her skinny arms rigid on either side of the yawning hole in that big toilet seat, swinging her little girl legs beneath her.

And my husband!

He tells me I'm beautiful at least five times a day.

And he means it!

He'd be shattered. Shattered if....

I'm just in a such a raw, post-natal haze of hormones and I am NEEDED so much and this makes me feel so very VULNERABLE.

I'm a nice mommy who lives in the suburbs.

Nothing at all can happen to me.

I mean, it MUST NOT.

But all I managed to sob in explanation for my tears was, "I'm lactating."

"That won't matter," the doctor reassured me. "That doesn't matter at all!"

That doctor, our family doctor, referred me to a specialist for a colposcopy. In the meantime he suggested I learn more about HPV. And he cautioned me not to worry about where the infection came from because there was just no telling.

"And no, you won't give it to your daughter even if you take a bath together," he laughed, rolling his eyes, as if this was just what I was thinking. It wasn't.

"It can only be transmitted sexually," he insisted.

Heavens to Betsy!

Sexually? Transmitted? As in sexually transmitted?

That can't happen to me! I've been in a monogamous relationship for well over a decade. My husband is not what you would call "a playah." He is what you would call "doting."

And did I mention that I'm a nice mommy who lives in the suburbs?

I have a newborn baby fereffingchrissakes! We don't even get to have sex!

It was easy to find out more about HPV.

But not really easy to process the whole HPV thing.

I found lots of sources that say that HPV infections are extremely common -- more than half of sexually active people (as in people who have had sex, like, ever) have one type of HPV infection or another at some point in their lives. And they are usually harmless. They are harmless or dire -- one or the other.

They are especially problematic for young women just starting to have sex. They are more likely to strike young women with multiple sexual partners.

It didn't fit. I'm not a teenager sleeping around with college boys. I'm 35. I'm married.

I also found lots of sources that say an HPV infection can be dormant for months and even years. Those sources like to say "dormant for up to two years" a lot.

But I've yet to find any that say it can be dormant for decades.

But my husband and I will celebrate our 10th wedding anniversary this summer.

So... if I only have had sex with my husband in the past decade in which we've been married... and it can take up to two years to infect you... then I must have got it from him within the past two years... which would explain all the clean paps I've had over the past decade, but if he's only had sex with me in the past decade in which we've been married...where in the crap-o-sphere did it come from?

The more I googled "HPV infections and dormancy" the more totally paranoid I became that my true love who -- let's face facts -- does seem a little too good to be true (what with sharing the housework and making lots of money and being an awesome father and an incredible cook who makes any stupid recipe I point out in any stupid gourmet magazine anytime I want and who built me a greenhouse and who loves ME even though I have about a billion and one faults -- ridiculously long and awkward sentence constructions with far too many conjunctions being just the tip of the iceberg) must be having sneaky sex with hookers when he "takes the dog for a walk" or on his "lunchbreaks" at work or... well, we really don't spend a lot of time apart, so when he would do this is a bit of a mystery.

I told a friend who knows us both about this "my wonderful husband is actually a philandering pervert theory" and she said, "Oh Honey, I don't know whether to smack you or roll around on the floor laughing. Him? Sleeping with hookers? No. That is preposterous. Stop it right now."

And I asked the specialist I saw, why now? I've been married for 10 years... and I burst into tears. And he said, "Aw, Kiddo. Doctors know absolutely nothing about the dormancy of HPV. So just totally forget about it. All it means is that you had sex with at least one person who has had sex with at least one other person. That's all it means." Then he raised his very stately black eyebrows in a way that said that his job was saving girls and women who were affected by an uncaring and random disease and that he didn't have an iota of time for any judgmental crap about it. He told me that he treated a 75 year old woman whose husband had been dead for over 30 years and who suddenly got a bad pap so that I absolutely shouldn't freak out.

So I let all that go. I had to. It's preposterous.

But there's no escaping that it came from someone who got it from someone else. That's the way it works.

I got this from a lover.

I probably got it way back when my sex life was more...let's go with...bohemian. Back when I was hot stuff. Back when nobody ever heard of sex giving you cancer. Back when I was legally an adult but totally a child.
I'm not angry with that past self -- that improv theatre performing, army-boot wearing, cigarette smoking, Bachelor of Arts-getting hottie who used words like "patriarchy" and "ennui." I definitely forgive that girl.

But that HPV diagnosis did shake me down.

Ouch.

And then I went for my colposcopy...


Down the Rabbit Hole: An HPV Story
by Betsy B. Honest



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11 comments:

  1. You know, when I had my two bad paps in a row, I kept waiting for the Dr to tell me I'd had an HPV infection too. But he never did. And I was too scared to ask.

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  2. Well most people do have an HPV infection at one point or another. Whether or not it causes you any trouble is another story, though. Remember to schedule regular paps!

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  3. I was diagnosed with this about 10-15 years ago and nothing since. In fact my paps have been so good for so long they tell me I can wait five years for my next one!! But I did get HPV early into my relationship with my husband (when we were dating) and that has sucked BIG TIME! Especially because he MUST be an asymptomatic carrier because he's never had an outbreak ever. Either that or it lay dormant for three years and in the 8 years we've been together he was just very lucky!! Anyway. Thanks for sharing this. Not many people do. But it's cool when they do because I think we all need to read this kind of stuff. We need to know we aren't alone. So, yeah, thanks. :)

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  4. I just got diagnosed with it 6 months ago and have not been back to the doc since.I go next month and im so scared that their going to tell me i have cervical cancer.I have a 2 year old and a 11 month old that need me!They depend on me!I am only 22 years old and i hate myself for doing what i did in the past.I dont want to leave my babies they need me and they are all i got vice versa.Im so scared betsy!What do i do?

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  5. Misti:

    Don't panic! It's very common and usually harmless. Most people do have HPV. Please don't hate yourself.

    I know how vulnerable you're feeling, but it will be okay. It's very treatable and manageable. But if you have an HPV infection, it has to be treated and managed. You probably have dysplasia, not cancer. Just resist any urges to stick your head in the sand. You can deal with it.

    Also, bring someone to the appointment with you who will hold your hand and give you a hug and keep a clear head and ask questions. Don't bring your kids to the doctor with you, get a sitter.

    You can e-mail me if you have questions:

    honest2betsy@gmail.com

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  6. Thank you so much i feel better about it all!I made a apt for April 11th.So i hope everything goes well in the apt.Thank you so much Betsy!
    Misty

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  7. Betsy,
    I have been married for 6 years..all normal paps until this past one...they asked to test me for HPV since its something they do at 30...I of course said no problem, my pap is normal...but im positive for HPV, i have to go back in 6 months from now. I have the high risk strain...i am a basketcase...ive been crying, i was the naughty one back before i got married...my husband was more reserved. I mean I had morals, but i had been with 4 guys prior to him. All of which were my boyfriends at the point of. I just cant believe this all...Its baffling, and my babies...they are 2 and 5...they couldnt catch this from me could they? I didnt ask a whole lot of questions because i was so embarrased and on the verge of tears at that very moment. I cant stop thinking about it. Any words of encouragement would be so helpful:) Thank you for sharing your story.

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    1. As much as it angered me to hear someone say to me "don't worry", it was the right reaction. HPV is not the end. If you keep going every 6 months to your gyn, you will be fine. My doctor told me that it takes 2 years for cancer to grow, so don't give up. You will have to keep going every 6 months until you get a clean pap, then after that you still go every 6 months until you have a clean pap every time for 3 years. Anything that comes up in early stages like this is treatable.

      It has nothing to do with being a "good girl" or being naughty. If you have had sex with someone who isn't a virgin, even once, you could have it. I'm not saying that to frighten anyone, but rather to let you know that it's no one person's fault. This isn't a disease like any other STI because there is still a lot unknown about the disease, and that it is fairly common. Despite being common, that doesn't make it any less important. Be sure to be responsible and see your doctor, and to protect yourself from spreading it to others. Men are carriers and they can carry it to other women who aren't immunized. You are married, so I don't think you have to worry about that.

      Your children can't get it from you. Don't worry about it. Just know when they get older that you can help them avoid this by getting them immunized.

      I want you to remember that this isn't the end of the world. Women everyday struggle with this, and even though it doesn't make things any easier, it will somehow make it a little less hard knowing you're not alone.

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  8. This is a long comment, so I will have to break it up in parts.

    Betsy,

    Thank you for writing about your personal journey through HPV. It is good for women to talk openly about the disease. It makes things easier when women can read about someone else who has wrestled with the disease. I was very comforted by your story. I feel a little less dramatic since I reacted a lot like you did when I was diagnosed. I cried in the car ride from my doctor's office.

    I was diagnosed in April of 2011 when I was 20 years old. It was hard for me to talk about it from embarrassment, but over time I talked about it more because of my concern for other young women. When I found out that this didn't have to happen to me, that I could have been immunized, but didn't know.... I did feel pretty upset. I felt like someone should have told me "hey, get that shot", but it was my responsibility. It was my mistake because I wasn't educated. I thought only loose women got that disease, but I was wrong. I didn't think I needed to get the vaccination because I was a "well rounded female". Through my mistake, I started talking to people about my experiences. It is important for me to tell others that this disease is common, to anyone that has any sexual activity at all. That it's not too late to get vaccinated, and that it could have saved me from what I've gone through. I haven't gone through as much as you, but it's still been rough. I commend how brave you are.

    My aunt went through a hysterectomy when she was 35 in the 60s. She had tumors. All her sisters also had the same thing happen in their 30s, and my great grandmother had some abnormalities in the 50s, but that was a time where things like that weren't discussed. At any rate, I was set up to have a less than peachy outcome with a history like that.

    I had a colposcopy, some minor surgeries, and I did have the LEEP procedure done. I had my LEEP in April of 2012 after a year with dealing with this.

    My saving grace came in July of 2012. I got a call at 11am, it was a Monday. My doctor told me my pap was clean and that I could finally rest up. It was finally over. I cried. I was in public, so I just ducked away and cried. I felt like I was saved. I felt a clean wash over me, like I wasn't dirty on the inside anymore, like I wasn't just waiting to die. I was happy.

    Recently, last month actually, I had my routine pap. Every 6 months for 3 years, and it was going fine. I was set to win, I was sure I'd get a clean pap every 6 months, for 3 years. I got a call, again it was 11am on a Monday morning. My doctor told me that I had an abnormal pap and that the dysplasia was back.

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  9. Part II:

    Again, I ducked away a cried, I felt sucked back into the darkness, and that it wasn't over. I felt that I had to fight again.

    It's been a month, and although from time to time I get upset that it's been almost 2 and a half years of being jerked back and forth, I haven't given up. I have hope because this just means I have to go through this again, just like before. If anything, I've done this before, and I think it'll be easier the second time around. I also don't discount my positives. I was vaccinated, so I won't get other strains, I abstain from sex, so I have no guilt passing it on, and I talk openly about it. If i can give hope to others that have gone through this, and inspire young women to get vaccinated, then I will feel that this experience wasn't something I regret. Even if the worst thing did happen, I want be the one to bear the burden if that means a future where women aren't affected so harshly by this disease, and that women will have more awareness.

    I feel a bit exposed talking about it in the open, even though I should be used to it. And even though I'm 22, I still cry like a baby. I'm not ashamed though. I know that if I show shame, that it's a bad example for others, and that the habitually cruel will relish my pain. I know if I'm brave, that others can be brave too, and if others are brave with me, I can keep being brave.

    Thank you for your story Betsy. You made me a little more hopeful, and I hope my story made someone hopeful too.

    I will end by saying I'm not a sentimental, pull on your heart strings, sappy person, but sometimes some things hit too close to home. Those things are unavoidable.

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    Replies
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