Diane Harper - "Why Am I Scared of HPV?"

• By bbthistle
• Posted October 19, 2009 at 4:17 pm
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Interesting. Its a topic everyone here can relate to. I've been on a roller coaster of emotions and opinions about my HPV and it always changes due to a new doctor. One doctor acted like it was nothing...told me I had HPV as I was leaving her office and handed me some pamphlets, sating it was no big deal and most women have it. My next doctor yelled at me for not using condoms with my long-term boyfriend (with whom I'd already been having sex...without condoms... with before I found out about my HPV) told me I had an STD and that I can not have sex without condoms because I was making it worst. She also told me I could never have children. Believe it or not I never went back to her office. She made me feel sick. I never heard of HPV until I had it. I took 2 sex ED courses in high school but never once was I informed. There is a lack of information about HPV so people and doctors alike are scared and confused. The stress of the situation does not help in building a healthier life to help fight the attack on the body. Further more I can never follow through with a plan of action since I am always finding contradicting information.

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• By corellin
• Posted October 19, 2009 at 6:07 pm
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bbthistle-- I'm so sorry about all that conflicting information from your doctors. And I understand what you're saying that it's hard to come up with a plan if you receive conflicting information from doctors.

It always helps to understand where you're at. It's like when you get lost and pull out a map, you need first find the spot, "you are here." So it helps to get a copy of your medical records and understand your diagnosis. Once you do, you can come up with a plan.

Meantime, it helps to do all those things that contribute to good health -- get lots of rest, eat plenty of fresh fruits and vegetables, especially cruciferous vegetables, such as broccoli, excercise moderately, maintain a positive attitude. It might help to use pads instead of tampons and use a condom for 6 months while you're trying to clear the HPV. I briefly saw a naturopath who put me on an "anti-inflammatory" diet. She gave me something specific to do, which really gave me a positive direction -- something to proactively do besides worry.

It would also help to know what type of HPV you have, since different types behave differently and some are more likely to clear than others. But the only FDA approved type-specific test is Cervista. There's a non-FDA approved test and I can give you that information by separate post if you're interested. HPV testing isn't recommended for women under 30, because it's thought it won't change what doctor's do. But I personally think it's useful to know your type -- also because I'm a data analyst and I think more information is always better than less.

I'm so sorry about the stress. It's quite a learning curve to figure out next steps, but eventually you will.

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• By bbthistle
• Posted October 19, 2009 at 8:01 pm
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Thanks for the support. This is one of the most frustrating things I've ever had to deal with. I pride myself in making logical and educated decisions but that has been impossible. I stumbled on this site earlier today and I already have a much better understanding of HPV.

I tried to ask my doctor which types of HPV I had and she told me there was no way to find out. I have been told I have high risk HPV and have had a biopsy of some abnormal growth but there was no signs of cancer. I'm in the process of looking for a new doctor. I'll have to get tested again when I find a doctor that is willing to let me in on the problem.

I already eat healthy and I've started taking vitamins. My boyfriend and I have started using condoms and he's started taking vitamins too. I read somewhere that if you use condoms for a few months and boost your immune system then you can fight off the virus. Do you know if this is true, or will we have to use condoms forever? We are in a monogamous relationship and someday want to have children.

I was told by a doctor that every time my boyfriend and I have sex, without a condom, we are creating new strains of the virus. I understand that we are passing the HVP we already have back and forth but I'm not sure I believe we are developing new strains. I couldn't believe this from the doctor because she was the one who tried to tell me I couldn't have children. I understand your not a doctor but I'd like to know what you've heard.

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• By flowershoplady
• Posted October 19, 2009 at 9:07 pm
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thanks for posting this, corellin!

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• By flowershoplady
• Posted October 19, 2009 at 9:13 pm
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bbthistle, sounds like you had a very creative and very misinformed doctor....UNbelievable that he told you such nonsense, and I'm sorry you had this experience. your current doctor, telling you he couldn't determine the specific strain may be true....theres an fda approved test for hpv16/18, but most labs don't yet have it....but you can certainly try to get the type determined.....contact labs, ask corellin for the lab info in washington, etc., and you will get your type known. meanwhile, you need to find a doctor who you trust, who is medically/technically proficient, and is experienced and knowledgeable about hpv. check to see that he/she is board certified. once you know your test results, you can work with your doctor, knowing the options, pros and cons, and his/her recommendation, to go forward.

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• By corellin
• Posted October 20, 2009 at 1:50 am
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I agree, flowershoplady -- very creative doctor indeed!

bbthistle, I hear you! I'm a data analyst and before my LEEP procedure, I tried to find some basic information, such as how many are performed each year and what are recurrence rates, etc. No such luck! I can answer some of your questions, though.

First, the main patient message from researchers and clinicians is that it's unlikely that HPV ping pongs back and forth between partners. They say that each partner's immune system independently either does or does not clear the virus and further exposure to the same virus doesn't alter the course of disease. There are even a few who think more exposure is better because if your body gets a bigger dose, you're more likely to mount an effective immune response. (I haven't seen any studies proving that theory -- just heard a few people talking...)

One of the best books on HPV is Joel Palefsky's book, "What your Doctor may not tell you about HPV and abnormal pap smears." It's a very well-balanced book and he's up front about what researchers know and what they don't know and what he believes and the pros and cons of his opinions and how they fit in with mainstream viewpoint. He's an infectious disease expert specializing in HPV in the MSM (men who have sex with men population) and is very well-regarded by the HPV community. He suggests that couples use condoms until three months after they both clear any lesions because he says it's "common sense" although he says that there haven't been studies to prove that it makes a difference and that others might disagree and that it's really up to couples to make that decision and if they decide not to use condoms it's a reasonable choice.

Since Dr. Palefsky wrote his book, there were a couple of papers published by Bleeker which suggest that using condoms can speed clearance of lesions in couples who share the same virus type. A reviewer pointed out that the condoms seemed to only make a difference the first six months and after that didn't change the course of disease much.

There was a study by the University of Hawaii that was about transmission of HPV in heterosexual couples, and it showed that there can be many transmission events -- since HPV is a skin disease and you can spread it from vulva to vagina to cervix to anus to oral cavity. In that study, couples who used condoms and were less sexually active transmitted HPV to fewer new places. The researchers didn't say whether the number of transmission events slowed clearance of HPV or development of CIN. (The study was short and almost no one developed CIN over the course of the study.)

I personally believe that HPV is self-limiting and is not likely to be passed back and forth indefinitely, but during that period of time where people are struggling to develop immunity to the virus (and before they've developed immunity) and while both people are active for the virus, I do think couples can further spread the virus between each other, so I think there's some value in using condoms -- but that it's ultimately an individual choice and will probably have different results for different couples -- depending on immune status, virus type, stage of infection, etc. -- and that it's probably a short-term intervention, such as for 6 months or until after clearance of lesions.

Now that the vaccine is out, there's some preliminary data that Gardasil/Cervarix might prevent a woman from spreading HPV (any of the 4 vaccine types) from one body part to another or from an infected spot on the cervix to an uninfected spot, and it might prevent partners from spreading it to uninfected spots in each other -- like from genitals to oral cavity -- although the vaccine won't clear HPV from an already infected spot.

About 80-90% of infections clear without intervention within 6 months to 2 years -- but certain virus types take longer to clear or are less likely to clear -- such as HPV 16. So that's why it could be helpful to know your type.

The key is to really try to bolster immune system in the early stages of the infection to try to clear it naturally, without a procedure. But if HPV becomes persistent and high grade CIN develops, then a procedure usually removes the worst spots of HPV and results in clearance of the virus. Even high grade dysplasia can regress -- so a lesion doesn't necessarily mean you'll need a procedure.

Good luck!

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• By ErinB248
• Posted October 20, 2009 at 7:53 am
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Excellent article. I do disagree with on of the points in there though.... waiting to test women until over 30 years of age because most 20-somethings are positive and it clears. I am 27 and my doctor tested me for HPV (thank God!). I had a postive HPV test and a normal pap. Had a colposcopy and found a lesion that was CIN-3. My LEEP showed that I had cervical cancer.

Just because most women clear the virus, doesn't mean that all women will and I think it is a disservice to women to wait to test for it. My situation could have been MUCH worse if I had waited another 3 years to be tested, since my pap smears weren't detecting a thing.

I am in medical school and planning on becoming an OB/gyn, and I will definitely be encouraging my patients to get tested since early detection is SOOOO important. I will also be making sure my patients are WELL informed before the testing occurs, and that they have a good (and accurate) understanding of what HPV is, since it seems like so many doctors are doing a crappy job of relaying this kind of info to their patients.

Thanks so much for sharing ths article!!!

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• By corellin
• Posted October 20, 2009 at 10:38 am
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ErinB248-- Thanks for sharing your experience. I also disagree that women shouldn't be tested for HPV until age 30. The median age for CIN3 is 29. Also, HPV is considered "persistent" if the same type persists more than 6 months (by some researchers), but definitely if it persists more than 2 years. So if a young girl has sex at 16 and is infected with type 31, if she still has that same type at 18, there's a problem. Why wait until 30 to find out? Also, it's very likely that many young people with persistent HPV (or even incident HPV that would clear) will develop a lesion, which will lead to more frequent pap screening and colposcopies, and if a woman is trying to decide whether to get a procedure, or to try to clear a lesion, she needs to know the HPV type and it's likelihood to persist or progress. And, I do think many women, if they knew they were HPV+, they might wait to clear it until having sex with a new partner, which would reduce the rates of transmission. Or, at the very least, condoms could be used which would reduce (though not entirely prevent) rates of transmission. Plus, if a woman knew she had HPV early on and was given an evidence-based protocol (things she could do) to increase chance of clearance, it's possible more HPV would clear and there would be fewer procedures.

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• By flowershoplady
• Posted October 20, 2009 at 10:49 am
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and, just to chime in and add my two cents, i, too, disagree with waiting until age 30 to do hpv testing....for all the reasons that corellin posted!

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• By bbthistle
• Posted October 23, 2009 at 2:42 pm
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corellin, you mentioned something about Gardasil/Cervarix research preventing women from spreading HPV to other areas of the body. I was considering asking my doctor if I should get vaccinated. I was apprehensive because it seemed a little late but I'm defiantly going to ask. Which types of HVP does Gardasil prevent? Would it have the same results if it is a strain you already have?

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• By corellin
• Posted October 23, 2009 at 3:46 pm
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bbthistle -- Gardasil protects against HPV types 6, 11 (low risk -- genital warts) and 16, 18 (high risk associated with cancer pre-cursors and sometimes cancer). Cervarix protects against 16 & 18, but seems to also have some cross protection against a few other types, such as 31 & 45 which are also "high risk" strains, but less risky than 16/18.

Neither of the vaccines can rid HPV from a cell once it's infected, but, theoretically, and there's some preliminary data that seems to indicate, they might prevent infection from happening in cells that aren't already infected. For example, Gardasil might prevent a woman who has HPV16 already from getting additional HPV16 infection at the anus or in a spot on the cervix where she's not already infected.

But -- data is very preliminary... I worry about how antibodies produced by Gardasil might interact with my own immune system in clearing disease from cells that are already infected. Will my body think everything's OK, so it doesn't mount as effective an immune response to clear existing disease? I haven't read anything to indicate that would happen, it's more a worry and I wonder if a virologist or someone who understands immune systems and how they work could answer that question.

But the vaccines will prevent you from getting infected with one of the vaccine types that you don't already have.

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• By bbthistle
• Posted October 28, 2009 at 5:12 pm
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corellin -- Very interesting. I never considered how my immune system would react to it. That is a fascinating point! I was strongly considering it but I'm less interested now. I don't want to do anything that could hinder my immune system from taking on HVP in full force. Thanks for your impute.

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• By corellin
• Posted October 28, 2009 at 9:20 pm
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Hi bbthistle -- please don't take my comments as a reason not to get the vaccine! I have absolutely no data to support those concerns of mine, and I'm not an "early adopter" type person, because I'm a little over-cautious.

If I were actively dating new people, I might consider getting the vaccine (even though I've already been infected with HPV16) and I think it's also very likely that the vaccine will turn out to be effective in preventing an existing infection from spreading to new spots without harm to the already-infected cells. I'm just really overly -cautious, which is why I'd rather let other people try it first. Is that completely cowardly of me???

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• By Faith2
• Posted October 29, 2009 at 10:21 am
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I take exception with a few things Harper has written and think her perspective is actually part of the problem women have to deal with surrounding HPV. How can you say on one hand, "Patient participation in any type of medical care is dependent on their understanding of the problem, confidence in their knowledge and choice of medical options, and the cost of care relative to other important aspects of their life. HPV education should address the sexually transmitted nature of HPV, the natural history and outcomes of HPV infection, the medical nomenclature encompassing HPV, and where HPV testing fits within current cervical cancer screening guidelines." and then, further in the article under FEAR, GUILT, ANXIETY AND PSYCHOLOGICAL DISTRESS write, "Health care providers may be acting contrary to the wishes of some of their patients if they choose to order reflex HPV testing (ordered prior to and contingent upon laboratory identification of the cytologic diagnosis of ASC-US) without having discussed in advance the potential implications of a positive HPV result. Although reflex HPV testing is efficient from the laboratory perspective and minimizes patient time and physical discomfort, other factors influence preferences, and providers should not assume that this option will be preferred by all, or even the majority of, patients. As with any other aspect of patient education, clinicians should ask questions that clarify a patient's interest in learning more about their condition, offer information relevant to patient needs and desires, and respect the choice of some patients to receive limited information. This issue presents a challenge to clinicians, as it requires skill and sensitivity. Many women with CIN or cervical cancer are surprised and upset upon learning about HPV, among these, some are nonetheless grateful to have this information, whereas others would have preferred not to know. Information about HPV should neither be withheld from patients who might have preferred to know, nor forced upon those who prefer not to know."

Are you kidding me? Is she living in this century? Does she not get how damaging this virus can be, and how important it is for the medical community TO DO THEIR JOB AND EDUCATE WOMEN AND MEN about this virus that is highly contagious???! Does the medical community keep people in the dark about swine flu? What if you have syphillis/gonorrhea, etc? That requires mandatory reporting and immediate treatment d/t the damage that's caused to the individual and the rapid spread. How can HPV be treated so cavalier?

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• By corellin
• Posted October 29, 2009 at 1:42 pm
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Faith2 -- I've been stewing about something for a while, and I feel like I'm always a rabblerouser, but I can't contain myself any longer. Here's a quote I found while looking through old issues of HPV Today, which is the newsletter that reflects the latest thoughts from the "experts" on HPV.

"Dr. Monsonego felt that information given to patients regarding the link between HPV and abnormal Paps must be limited to only women over the age of 35 with persistent high-risk HPV infection or to women with abnormal Paps." - page 6

http://www.hpvtoday.com/webDocs/Eng/downloads/HPV/HPVToday01_Eng.pdf

Although I'm not sure that this doctor's view is representative of how doctors feel now (with the availability of vaccine and HPV testing), I do feel it reflects the pre-vaccine protocol, which was not to tell women about HPV. Clearly. Were any of us told? What gave them the right to take away our choice by not telling us about this highly infectious sexually transmitted disease?

Here's another quote:
"3. HPV as an STD is Not the Issue. Doctors often hesitate to discuss HPV with their female patients because it is a sexually transmitted disease, which can potentially raise issues of infidelity." page 5 of the same issue

And here's another one:
"The patient must understand the epidemiology of HPV well enough to resist the temptation to engage in a witch-hunt to assign blame for the presence of a commensal virus in her genital tract"

http://www.hpvtoday.com/webDocs/Eng/downloads/HPV/HPVToday03_Eng+add.pdf
From the article toward the end of the newsletter entitled: "PREPARING THE HEALTH DECISION-MAKERS, PARENTS AND ADOLESCENTS FOR THE ULTIMATE FIGHT AGAINST CERVICAL CANCER!"

It seems to me that the only message patients receive on communicating with partners is either -- don't tell them or don't blame them. That's a really convenient message for men and not supportive of a woman's experience.

Here's another one that really makes me mad:

from the article "How to Explain HPV to Your Patient."
Sexual transmission
Having intercourse is one of the most exciting activities in life. The possibility of contracting cancer through sexual intercourse is a very difficult communication issue to handle. In most instances, mucosal oncogenic HPVs at the genital level are sexually acquired, and patients link the presence of HPV to a specific sexual partner or contact. The key point to understand is that transmission of microorganisms, whether virus or bacteria, occurs normally during intercourse, whereas disease development is a host-dependent phenomenon. In the case of HPV-related neoplasia, virus persistence, not the presence of the virus, is the factor that relates to disease development, therefore the cause of the disease is not to be found in the person who transmitted the agent. Rather, disease development is to be found in those factors which affect the “normal” process of viral clearance in the host. In this way the key message is not “try to avoid HPV”, but “know if there is a persistent viral infection”, so the message is not “don’t have intercourse”, but “if having intercourse, test for the presence of persistent, high-risk viral infection”.

http://www.hpvtoday.com/webDocs/Eng/downloads/HPV/HPVToday07_Eng.pdf

Is anyone else bothered by that statement? In other words, the infection isn't to blame for a bad outcome, it's the fault of the host.... the woman.... Don't blame the man, blame the woman. Sound familiar?

I'm not suggesting we go on a "witch hunt", but, come on! This is the 21st century (I think) and not a male dominated society. Both men and women need to take responsibility for this disease. And we need to combine existing protocols (screening and vaccination) with some good old fashioned basic infection control which starts by educating people about the virus and being honest about how deadly it is, rather than downplaying its consequences.

The guy above also wrote this about cone/LEEP/cryotherapy:

"it is well known that HPV can cause only two diseases in the genital tract: genital warts and squamous intraepithelial lesion (SIL); the latter is easily detected by cytology screening and eliminated through a simple office procedure under local anesthesia."

Bullshit! Tell that to the two wonderful women on our website who are facing unwanted hysterectomies today due to recurrent dysplasia (after many such "simple" office procedures),


And, finally, this really PISSES ME OFF! Here's a message in a pamphlet to men on HPV:

"Having HPV is part of being a normal, sexually active person!" (Their exclamation mark, not mine.)

http://www.ashastd.org/pdfs/HPVMensample.pdf

The message above accepts that it's necessary that HPV be fully saturated throughout a population when in fact, that's actually not true. In Spain, where they have a high rate of monogamy for both men and women, the rates of HPV are actually low -- as is the rate of cervical cancer. So educating people about real risk, so they can make informed choices, is important in helping reduce the spread of HPV in the population. By downplaying risk and assigning blame to "the host" (in other words, the woman), we ensure that HPV is maximally spread throughout the population with the result that it does great harm to a certain percentage of women. Although it's hard to know for sure -- because these numbers aren't well-tracked -- but I've spoken with researchers and their best guess is that about 1 in 4 women will get a colposcopy at some point in their life; about 1 in 10 women will have a cervical procedure; about 1 in 5 women who get high risk HPV will end up with at least one cervical procedure. In my view, those are not acceptable levels of risk and both women and men deserve to know about HPV and how they personally can take actions to reduce the spread of HPV to others (and reduce the risk to themselves).

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• By flowershoplady
• Posted October 29, 2009 at 9:48 pm
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thank you for sharing this, corellin, and your thoughts. i hardly know what to say....and that doesn't often happen! i just find this all so upsetting, the lack of respect being shown to women, for their intelligence and ability to understand and make decisions. and, i find it particularly unbelievable that it's being expressed by doctors and organizations that have such a potentially significant on women (and men), individually, and as a group. clearly, not all believe that knowledge is power. the acceptance of hpv and transmission (and its consequences) as part of life is simply unacceptable to me.

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• By corellin
• Posted October 29, 2009 at 11:12 pm
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I agree, flowershoplady. Thank you for your comments. I've felt much more at peace after having shared these thoughts that have been so weighing on my mind.

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• By flowershoplady
• Posted October 29, 2009 at 11:24 pm
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corellin, well that's good! and, know that you're not alone. i think there are still too many doctors who have the approach that they know what's best for their patients, and they should just be left to do what they know what's best. fortunately, more and more doctors are embracing the approach that the patient is part of the medical 'team'. but, as we see here, many women don't have doctors who keep them fully informed. i still think that things are changing, but when the direction from those settting policy remain disrespectful of women (i consider it disrespectful!) and accepting of rampant hpv transmission, we'll continue to have women misinformed and men and women not understanding that they could help to prevent hpv transmission, and thus the continued spread.

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• By Faith2
• Posted October 30, 2009 at 2:22 am
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Hey Corellin & FSL,

I couldn't agree w/you more. I'm ready to rumble..l've been wracking my brain about what to do i.e. the teen pamphlet/book, etc., & I think I've come up with something that's going to take a collaborative approach - and it starts right here, with the women on this site. I just started reading Dragonfly's book and can't tell you how much it's resonating with me. I get that this site is for support in many ways/forms. And often, I find myself venting, but not sure if change is really happening. Anyway, if you're interested in talking, please send me a message. I'd like to get moving on this. Thx

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• By corellin
• Posted October 30, 2009 at 12:02 pm
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The International Papillomavirus conference is being held next July, and maybe we could write a letter to the organizing committee giving them some feedback as patients. At the last conference, I felt that there was a lot of commitment and fine work being done by many, but that the conference was missing the patient voice. I actually felt the same about the NCCC conference held in L.A., which had excellent presenters and was wonderfully organized and also had a great session on how patients could reach out to the community -- but which was rife with biases of the presenters that, in some very fundamental ways, did not reflect patient needs or experiences. It felt like a patriarchals system, where women needed to sit down and listen to how everyone else thought they should be handling HPV.

At the beginning of each presentation at the International Conference, the presenters had to disclose any "biases" which were defined as relationships with drug companies or other commercial entitities that might be funding their research, thus potentially resulting in a conflict of interest. But I would interpret biases differently and more broadly. In my view, the most destructive biases (or ones that most likely impact research -- both the design of research and the interpretation of research) are the values and beliefs held by the researchers/HPV community as well as the culture that develops over time and will develop in a particular direction if not influenced or acted upon by other parties who might have a different perspective. We, the patients, have a different perspective and our perspective needs to be heard. I think we have an opportunity to influence at the highest levels if we can reach this community.

This community determines education, it determines what research is being done, how healthcare dollars are being allocated, etc. Reaching and influencing this community would be starting at the very top.

Another thought I had -- although I really DON'T want to go down this road -- is that most major change that pertains to women has happened through legislation -- whether the right to vote, or the reduction of sexual harrassment in the workplace or equal pay for equal work. It occurred to me that perhaps the only way to wrest control from the hands of the powers that be and put it back into the hands of women, is a class action lawsuit. Again, this is not my style at all, so I'm just brainstorming here....

In my view, there are three bases for a lawsuite.
1. The deliberate withholding of information about HPV -- the connection between HPV and cervical cancer from women, such that we were not informed when we went to the doctor for pap smears and sex ed textbooks have historically not communicated information about high risk HPV.
2. The lack of "informed consent" with respect to procedures. The long-term consequences are not communicated to women so they do not have all the information to make decisions between various options.
3. The lack of availability of the HPV test to women and men shortly after sexual debt and the decision that the test should only be used in connection with cancer screening. Again, this takes away our "right to know" -- that we're infected, so we can take action to prevent the spread to partners and try to clear the HPV infection early on through natural means, hopefully reducing the number of procedures.

There are other issues as well, but the three above involve disclosure and the "right to know." In my view, it's unethical that we went to the doctor for screening and never new what it was for. It's unethical for the doctor to not fully disclose the side effects of procedures when we're asked to give "informed consent" and it violates a basic freedom for the FDA and medical community to withhold technology that could provide information to help us make more informed medical and social decisions.

But again -- I really don't favor lawsuits, which seem like a huge waste of time and money, but sometimes, if the culture is too entrenched in sexist/patriarchal behavior, it truly does take the strong arm of the law, the critical eye of the courts, and a jury of peers, resulting in either an expensive lawsuit or a new law, to change attitudes and behaviors. Someone has to stand up and say, "This is not Okay!"

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