I have High Risk hpv. What now?
May 3, 2013 1:37 PM Subscribe
I just found out I have High Risk hpv. My doctor didn't seem too concerned, but I feel like my world is falling apart. How do I cope?
My Pap smear is normal but showed that the virus is there. My doctor didn't seem too concerned and said to just keep up with my annual paps, and didn't really want to engage in any discussion about my various emotions surrounding this. I'm falling apart and would like some advice and resources. Things I've tried to tell myself to help me stop freaking out but hasn't worked:
1) I'm under thirty, and The Internet recommends not getting screened for hpv before that age because it's quite common and tends to clear in 2 years. Doesn't help.
Um... I guess that's the only thing I've tried to tell myself. I feel incredibly alone because I don't want to go around blabbing about it because of the stigma associated with it. This is incredibly difficult for me because I normally cope with problems by talking to everyone I possibly can, crying/talking it away and moving on. That's the hardest part - I feel crushingly alone. But I just don't want to be labeled as "has an un curable std" until I know whether or not it'll clear.
I feel horrified and guilty that I may have given it to someone. I know two of the people I've slept with since my pap before this one were completely clean and I feel like I may have unknowingly screwed their lives up. I'm a lesbian and stupidly thought you couldn't catch an std from another woman. I also stupidly slept with multiple women after my last break up, I went back trying to figure out who I could have caught it from and there's 4 people on the list.
I'm just looking for advice, encouraging words, resources not easily google able. My doctor pretty much told me it was no big deal, but I'm so freaked out that I started crying in the office while I was waiting. I feel like I've been told I have a much higher than average chance of getting cervical cancer in the next five years, which was already probably higher than normal since I smoke, and I just have to wait around for two years to see if my immune system fights it off.
My Pap smear is normal but showed that the virus is there. My doctor didn't seem too concerned and said to just keep up with my annual paps, and didn't really want to engage in any discussion about my various emotions surrounding this. I'm falling apart and would like some advice and resources. Things I've tried to tell myself to help me stop freaking out but hasn't worked:
1) I'm under thirty, and The Internet recommends not getting screened for hpv before that age because it's quite common and tends to clear in 2 years. Doesn't help.
Um... I guess that's the only thing I've tried to tell myself. I feel incredibly alone because I don't want to go around blabbing about it because of the stigma associated with it. This is incredibly difficult for me because I normally cope with problems by talking to everyone I possibly can, crying/talking it away and moving on. That's the hardest part - I feel crushingly alone. But I just don't want to be labeled as "has an un curable std" until I know whether or not it'll clear.
I feel horrified and guilty that I may have given it to someone. I know two of the people I've slept with since my pap before this one were completely clean and I feel like I may have unknowingly screwed their lives up. I'm a lesbian and stupidly thought you couldn't catch an std from another woman. I also stupidly slept with multiple women after my last break up, I went back trying to figure out who I could have caught it from and there's 4 people on the list.
I'm just looking for advice, encouraging words, resources not easily google able. My doctor pretty much told me it was no big deal, but I'm so freaked out that I started crying in the office while I was waiting. I feel like I've been told I have a much higher than average chance of getting cervical cancer in the next five years, which was already probably higher than normal since I smoke, and I just have to wait around for two years to see if my immune system fights it off.
Well, the wikipedia article on HPV says that 97% of women infected with a high risk HPV strain will clear the infection within 18 months. That seems pretty reassuring to me.
As is this bit: One study found that, during 2003–2004, at any given time, 26.8% of women aged 14 to 59 were infected with at least one type of HPV. This was higher than previous estimates; 15.2% were infected with one or more of the high-risk types that can cause cancer.
I understand why you're so worried, fear of things is often because we feel we can't control them. However its important to understand how many people have the same virus as you, and how many of those people don't get any negative consequences from it.
posted by DrRotcod at 1:56 PM on May 3, 2013 [3 favorites]
As is this bit: One study found that, during 2003–2004, at any given time, 26.8% of women aged 14 to 59 were infected with at least one type of HPV. This was higher than previous estimates; 15.2% were infected with one or more of the high-risk types that can cause cancer.
I understand why you're so worried, fear of things is often because we feel we can't control them. However its important to understand how many people have the same virus as you, and how many of those people don't get any negative consequences from it.
posted by DrRotcod at 1:56 PM on May 3, 2013 [3 favorites]
If nothing else, get a new doctor. First, you can get more tests to ensure that the diagnosis is accurate and that you're otherwise healthy, and you can get someone who will be willing and able to give you the full facts about your diagnosis (for example, IANAD, but I don't think it's accurate to say that you have a much higher risk of getting cervical cancer in the next five years, and you have every right to ask questions about what your risk actually is). Your new doctor may be able to recommend things you can do to reduce whatever risks you do face, but at the very least, s/he will be able to give you a more realistic picture of what those risks actually are that might help you to sort through the feelings you're having.
But second, and more importantly, it sounds as though your doctor was sort of insensitive and jerkish about all of this. You are absolutely entitled to a doctor who will not brush off your medical concerns and who will engage with you in a compassionate and helpful way when you're upset about your health. It sounds as though you need a different doctor. That doesn't mean that this doctor is terrible, it just means that s/he is not the right doctor for you.
You haven't done anything wrong. You're not stupid, and you're not tainted or unworthy, although I understand that getting an STD diagnosis can make you feel that way. And you're entitled to a medical professional who will take your feelings seriously and give you both factual information and emotional support to help you deal with them. You're not getting that, and you should find a doctor who can give that to you.
If you have a mod post your location, we may be able to give recommendations for doctors in your area who fit the bill. In general, Planned Parenthood is a good bet, because their doctors see a lot of patients dealing with upsetting things, and they tend to be very good at giving people full information about their sexual and reproductive health while also being nonjudgmental and supportive.
posted by decathecting at 1:57 PM on May 3, 2013
But second, and more importantly, it sounds as though your doctor was sort of insensitive and jerkish about all of this. You are absolutely entitled to a doctor who will not brush off your medical concerns and who will engage with you in a compassionate and helpful way when you're upset about your health. It sounds as though you need a different doctor. That doesn't mean that this doctor is terrible, it just means that s/he is not the right doctor for you.
You haven't done anything wrong. You're not stupid, and you're not tainted or unworthy, although I understand that getting an STD diagnosis can make you feel that way. And you're entitled to a medical professional who will take your feelings seriously and give you both factual information and emotional support to help you deal with them. You're not getting that, and you should find a doctor who can give that to you.
If you have a mod post your location, we may be able to give recommendations for doctors in your area who fit the bill. In general, Planned Parenthood is a good bet, because their doctors see a lot of patients dealing with upsetting things, and they tend to be very good at giving people full information about their sexual and reproductive health while also being nonjudgmental and supportive.
posted by decathecting at 1:57 PM on May 3, 2013
WOAH NOW!
First, calm down. My OB/GYN told me that nearly 90% or more sexually active people have HPV. Also, you said your partners were "clean" but did they specifically get screened for HPV? It's not in a normal STI screening.
Read up on HPV from the Centers for Disease Control
Yes, HPV can be serious, however your PAP came back normal!!!! That mean's that your cells have not changed and your body is fighting the HPV, as it does most of the time. Now, if you are truly concerned you can see a new doctor, or schedule a PAP in 6 months instead of 1 year.
Also, IF you get an abnormal pap, you can treat it. And if you are getting checked regularly, they should easily be able to catch any abnormal cells and treat you. (read my answer in another ask about abnormal pap.)
Also, am I just the weird one? Because I have never heard of a stigma against people with HPV because there is not a great way to screen for it regularly and most people have it. (I am straight, and there is no way to tell if a male is a carrier, so even though I had a lot of partners, it was pretty inevitable that I would get HPV. Welcome to the 90+% of people who have it.)
posted by Crystalinne at 1:58 PM on May 3, 2013 [3 favorites]
First, calm down. My OB/GYN told me that nearly 90% or more sexually active people have HPV. Also, you said your partners were "clean" but did they specifically get screened for HPV? It's not in a normal STI screening.
Read up on HPV from the Centers for Disease Control
Yes, HPV can be serious, however your PAP came back normal!!!! That mean's that your cells have not changed and your body is fighting the HPV, as it does most of the time. Now, if you are truly concerned you can see a new doctor, or schedule a PAP in 6 months instead of 1 year.
Also, IF you get an abnormal pap, you can treat it. And if you are getting checked regularly, they should easily be able to catch any abnormal cells and treat you. (read my answer in another ask about abnormal pap.)
Also, am I just the weird one? Because I have never heard of a stigma against people with HPV because there is not a great way to screen for it regularly and most people have it. (I am straight, and there is no way to tell if a male is a carrier, so even though I had a lot of partners, it was pretty inevitable that I would get HPV. Welcome to the 90+% of people who have it.)
posted by Crystalinne at 1:58 PM on May 3, 2013 [3 favorites]
Where I am, doctors ask you to get a six month follow-up pap after an abnormal one. Perhaps you can request this to help ease your mind - 6 months isn't too far away. In addition, you can still get the HPV vaccine (if you are covered/can afford to pay) to guard against another high-risk strain and the genital warts strains (the vaccine covers 4 different ones). Finally, try to relax - HPV is incredibly, incredibly common. Most people don't know they have it, so I don't know how certain you can be about which partners were 'clean' or not. As long as you are getting regular check-ups, it's very unlikely that it will progress into cervical cancer - this situation is what Paps were made for.
posted by ghost dance beat at 2:01 PM on May 3, 2013
posted by ghost dance beat at 2:01 PM on May 3, 2013
You might find this previous askme helpful. (My own comment there has a link to the CDC's fact sheet about HPV and I discussed what little there is to know about the risk of transmission between women.)
Like decathecting says, I think you should ask a different, more sensitive doctor about follow-ups and Gardasil etc.
posted by clavicle at 2:04 PM on May 3, 2013
Like decathecting says, I think you should ask a different, more sensitive doctor about follow-ups and Gardasil etc.
posted by clavicle at 2:04 PM on May 3, 2013
I feel like I've been told I have a much higher than average chance of getting cervical cancer in the next five years, which was already probably higher than normal since I smoke
Given your current state maybe numbers/stats aren't what you're looking for, so skip this post if that's not where you're at. But on the off chance that you're a numbers-type, I'll give it a shot with some back of the envelope calculations.
What you say is true. Unfortunately, there is no doubt that you are at a higher RELATIVE risk of cervical cancer, but your ABSOLUTE risk is still tiny. And it's important that you keep things in perspective.
According to a JAMA article from 2007, the overall prevalence of high-risk HPV strains in the US female population is about 15%.1 That's approximately 22.5 MILLION women. On the other hand, in a given year about 12,000 women are diagnosed with cervical cancer.2 Ignoring the small fraction of cancers unrelated to these strains, that's about 0.05% of women with high-risk strains of HPV per year. Or 1 in 2,000 women with a high-risk strain. And among those women who do get this diagnosis, those who were in your position (knew they had the virus, got the recommended surveillance testing, STOPPED SMOKING) likely had phenomenal odds for early recognition, treatment and cure.
At the risk of being insensitive, by way of comparison: if you step back and weigh the risks of this HPV virus diagnosis against, for example, the simple and modifiable fact that you smoke, the impact of the virus on your health may be almost negligible.
posted by drpynchon at 2:34 PM on May 3, 2013 [6 favorites]
Given your current state maybe numbers/stats aren't what you're looking for, so skip this post if that's not where you're at. But on the off chance that you're a numbers-type, I'll give it a shot with some back of the envelope calculations.
What you say is true. Unfortunately, there is no doubt that you are at a higher RELATIVE risk of cervical cancer, but your ABSOLUTE risk is still tiny. And it's important that you keep things in perspective.
According to a JAMA article from 2007, the overall prevalence of high-risk HPV strains in the US female population is about 15%.1 That's approximately 22.5 MILLION women. On the other hand, in a given year about 12,000 women are diagnosed with cervical cancer.2 Ignoring the small fraction of cancers unrelated to these strains, that's about 0.05% of women with high-risk strains of HPV per year. Or 1 in 2,000 women with a high-risk strain. And among those women who do get this diagnosis, those who were in your position (knew they had the virus, got the recommended surveillance testing, STOPPED SMOKING) likely had phenomenal odds for early recognition, treatment and cure.
At the risk of being insensitive, by way of comparison: if you step back and weigh the risks of this HPV virus diagnosis against, for example, the simple and modifiable fact that you smoke, the impact of the virus on your health may be almost negligible.
posted by drpynchon at 2:34 PM on May 3, 2013 [6 favorites]
My Pap smear is normal but showed that the virus is there.
Pap smears don't test for HPV, there's a separate test for that. Presumably you were given this test as well as a pap.
According to Planned Parenthood, only one out of 1,000 women who contracts cancer-related HPV will develop full-blown cervical cancer. There's some information on that page about specific types of HPV and what to do, it looks like if HPV type 16 or 18 is found, you should have a colposcopy.
What you should do: find out what type of HPV you tested positive for, find a new gyno that you have a better rapport with, and stop smoking.
I just don't want to be labeled as "has an un curable std"
If you came down with a cold and started talking with people about how you have a virus and there's no medical treatment for it, people would be kind of freaked out. You seem to have a very frightening narrative around this, I don't know if your doctor explained it in a really apocalyptic sounding way or if you got these ideas somewhere else, but you might want to hold off on talking about it with people for a while. Of course if you go to people and are crying and upset they will think you have a Very Serious disease -- but it's more likely than not that the only difference between you and them is that your doctor routinely does HPV testing, and theirs does not.
Talk to people after you've got some more information and feel calmer. Yes, you have a higher than average chance of cervical cancer -- the average for women your age is very very very low, so maybe your chances are now very very low instead. It's something to keep an eye on, but if you want to put a lot of energy in to worry over your health it would make more sense to worry about your smoking.
posted by yohko at 2:39 PM on May 3, 2013
Pap smears don't test for HPV, there's a separate test for that. Presumably you were given this test as well as a pap.
According to Planned Parenthood, only one out of 1,000 women who contracts cancer-related HPV will develop full-blown cervical cancer. There's some information on that page about specific types of HPV and what to do, it looks like if HPV type 16 or 18 is found, you should have a colposcopy.
What you should do: find out what type of HPV you tested positive for, find a new gyno that you have a better rapport with, and stop smoking.
I just don't want to be labeled as "has an un curable std"
If you came down with a cold and started talking with people about how you have a virus and there's no medical treatment for it, people would be kind of freaked out. You seem to have a very frightening narrative around this, I don't know if your doctor explained it in a really apocalyptic sounding way or if you got these ideas somewhere else, but you might want to hold off on talking about it with people for a while. Of course if you go to people and are crying and upset they will think you have a Very Serious disease -- but it's more likely than not that the only difference between you and them is that your doctor routinely does HPV testing, and theirs does not.
Talk to people after you've got some more information and feel calmer. Yes, you have a higher than average chance of cervical cancer -- the average for women your age is very very very low, so maybe your chances are now very very low instead. It's something to keep an eye on, but if you want to put a lot of energy in to worry over your health it would make more sense to worry about your smoking.
posted by yohko at 2:39 PM on May 3, 2013
I have high-risk HPV, and have not cleared it as expected, and am fine. You are going to be fine. You will probably, like most women, clear it within a year or 18 months and it will not be a big deal. You should stop smoking now, though I'm sure you know that, as that would help bolster your immune system and improve the odds of you clearing the virus.
If you don't clear it, your doctor might do a colposcopy next year regardless of whether your Pap smear is normal. Mine did. This is not a big deal; they get a closer look at your cervix and do a punch biopsy of anything that looks funny (or possibly some things that don't look funny, just to be sure). And then you deal with the results. The vast, vast majority of "bad" stuff they see- and they may not see anything! and you'll probably clear it in a year anyway and not even get to this step!- is easy enough to eliminate with a LEEP procedure if it is bad enough they don't decide to just wait and see. As long as you follow up as your doctor has told you the odds of you getting actual invasive cervical cancer are vanishingly small.
I hesitated to post the paragraph below because I don't want to freak you out, but I have lived what is close to the worst-case scenario you might see as someone who is on top of her health and checkups and doesn't smoke. I decided to post it anyway because I want you to know that even the odds-this-won't-happen fairly crappy situation is manageable:
I had three years of normal Pap smears and positive HPV tests once I turned 30 (I may have had the virus before then, but wasn't tested for it because of my age, and because the virus can remain dormant for so long, there's not much point in trying to figure out who gave it to me or whom I might have given it to), and 2 just-in-case colposopies. At the last colposcopy they did a few punch biopsies and endocervical curettage, which caught an adenocarcinoma in situ the pap smear hadn't. I had a cone biopsy to deal with that, and am now going to have pretty much endless followup with a gynecological oncologist and who knows if I'll ever clear the virus and you know what? I'm fine. We caught it early. If the follow-up catches more, we'll get it early too, and I'll probably be fine then. You'll follow up like you should and you'll be fine, too, and odds are good you won't have to deal anything beyond another pap/HPV in a year that tells you you've cleared the virus.
I did lose my shit a little bit when this was all going down, at the first "you have HPV" call and also at the "here's your new oncologist's number" call three years later. You have my permission to lose your shit some too if you want for a day or two, but then please know that after that you'll be fine.
Please MeMail me if you would like to talk a little more. Take care of yourself. This is going to be okay.
posted by charmedimsure at 3:00 PM on May 3, 2013 [13 favorites]
If you don't clear it, your doctor might do a colposcopy next year regardless of whether your Pap smear is normal. Mine did. This is not a big deal; they get a closer look at your cervix and do a punch biopsy of anything that looks funny (or possibly some things that don't look funny, just to be sure). And then you deal with the results. The vast, vast majority of "bad" stuff they see- and they may not see anything! and you'll probably clear it in a year anyway and not even get to this step!- is easy enough to eliminate with a LEEP procedure if it is bad enough they don't decide to just wait and see. As long as you follow up as your doctor has told you the odds of you getting actual invasive cervical cancer are vanishingly small.
I hesitated to post the paragraph below because I don't want to freak you out, but I have lived what is close to the worst-case scenario you might see as someone who is on top of her health and checkups and doesn't smoke. I decided to post it anyway because I want you to know that even the odds-this-won't-happen fairly crappy situation is manageable:
I had three years of normal Pap smears and positive HPV tests once I turned 30 (I may have had the virus before then, but wasn't tested for it because of my age, and because the virus can remain dormant for so long, there's not much point in trying to figure out who gave it to me or whom I might have given it to), and 2 just-in-case colposopies. At the last colposcopy they did a few punch biopsies and endocervical curettage, which caught an adenocarcinoma in situ the pap smear hadn't. I had a cone biopsy to deal with that, and am now going to have pretty much endless followup with a gynecological oncologist and who knows if I'll ever clear the virus and you know what? I'm fine. We caught it early. If the follow-up catches more, we'll get it early too, and I'll probably be fine then. You'll follow up like you should and you'll be fine, too, and odds are good you won't have to deal anything beyond another pap/HPV in a year that tells you you've cleared the virus.
I did lose my shit a little bit when this was all going down, at the first "you have HPV" call and also at the "here's your new oncologist's number" call three years later. You have my permission to lose your shit some too if you want for a day or two, but then please know that after that you'll be fine.
Please MeMail me if you would like to talk a little more. Take care of yourself. This is going to be okay.
posted by charmedimsure at 3:00 PM on May 3, 2013 [13 favorites]
I am going to make a huge guess here and assume you are in a college setting and this was a student health doctor. The reason I'm guessing this is that I had a very similar situation with my doctor when she told me I not only had HPV but I also had cervical cancer. She was rude, dismissive and refused to discuss further tests with me. I dumped her quickly.
If what I assume is true -- here is what you need to think about (if this is not at all true, then you can pick and choose from this list). First, if you are only going there because it is the health plan you can afford, then do yourself a favor and go see another doctor. Either pick another one in the place or go get one outside of school. Even if you are paying out of pocket, it is not going to be that much (for a visit and MAYBE some tests? $200?). If you are a student, that might seem like a lot, but it is payable and you can tell them up front that you need a payment plan. It's a worthy investment. Second, don't be afraid to tell your parents or whomever is helping you financially (if anyone). I was terrified to tell my mom because I thought it meant I was slutty. It did not. It meant I had cancer and my parents were incredibly supportive. Finally, you don't need to worry that you are spreading this around. Again, about 90% of young women have this. It's not an STD per se as much as it is a disease that likes to live in places that happen to be your genitals. If your concern is where it came from, then that's a losing game. If you are concerned about spreading it, then you need to be upfront with your partners. Remember that it is a jumping virus and does not need direct contact to be spread.
Finally, please be aware that high-risk is not the same as cancer and an abnormal pap can absolutely clear itself over time. As charmedimsure says above, the worst case scenario is not the end of the world, if things are caught early. It's better to have a sense of your own health and go for those yearly pap smears (or 6 months or whatever) and be aware of your unhealthy habits than to neglect your health and find out that you have cancer that could have been caught earlier if you had been more vigilant.
Good luck! MeMail me if you have any questions.
posted by mrfuga0 at 3:38 PM on May 3, 2013
If what I assume is true -- here is what you need to think about (if this is not at all true, then you can pick and choose from this list). First, if you are only going there because it is the health plan you can afford, then do yourself a favor and go see another doctor. Either pick another one in the place or go get one outside of school. Even if you are paying out of pocket, it is not going to be that much (for a visit and MAYBE some tests? $200?). If you are a student, that might seem like a lot, but it is payable and you can tell them up front that you need a payment plan. It's a worthy investment. Second, don't be afraid to tell your parents or whomever is helping you financially (if anyone). I was terrified to tell my mom because I thought it meant I was slutty. It did not. It meant I had cancer and my parents were incredibly supportive. Finally, you don't need to worry that you are spreading this around. Again, about 90% of young women have this. It's not an STD per se as much as it is a disease that likes to live in places that happen to be your genitals. If your concern is where it came from, then that's a losing game. If you are concerned about spreading it, then you need to be upfront with your partners. Remember that it is a jumping virus and does not need direct contact to be spread.
Finally, please be aware that high-risk is not the same as cancer and an abnormal pap can absolutely clear itself over time. As charmedimsure says above, the worst case scenario is not the end of the world, if things are caught early. It's better to have a sense of your own health and go for those yearly pap smears (or 6 months or whatever) and be aware of your unhealthy habits than to neglect your health and find out that you have cancer that could have been caught earlier if you had been more vigilant.
Good luck! MeMail me if you have any questions.
posted by mrfuga0 at 3:38 PM on May 3, 2013
I am confused that you wrote "my pap test was normal but showed high risk hpv." Pap tests do not check for hpv directly: they check for the presence of abnormal cervical cells, which are often caused by hpv. If you are under 30 and had a normal pap test, why were you tested for hpv, unless you were participating in research? There's no reason you even should have been tested. It's so common in young people that the information really isn't useful in the absence of cervical changes--that's why testing isn't recommended for that age range.
Yes, you will almost certainly clear the virus within two years. I know it's easier said than done, but there's really no reason to worry about it. I am sorry you've had such a horrible experience with healthcare providers.
posted by Violet Hour at 12:24 AM on May 4, 2013
Yes, you will almost certainly clear the virus within two years. I know it's easier said than done, but there's really no reason to worry about it. I am sorry you've had such a horrible experience with healthcare providers.
posted by Violet Hour at 12:24 AM on May 4, 2013
This thread is closed to new comments.
Take the opportunity to get your health in order. Read: optimal. A seriously healthy person (mentally, physically, emotionally) has the immune system you are looking for.
If you're Type A, you can look up the actual percentage likelihood that you'll get some terrible consequence (i.e., cervical cancer) and then compare it to the percentage likelihood that you'll get in a car accident or something else that is probably far, far more likely. Just to put it in perspective.
posted by letahl at 1:56 PM on May 3, 2013