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HPV and the guilt/blame game HPV and the guilt/blame game

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  #11  
Unread 12-21-2003, 03:28 AM
Something to talk about

Janie,

I agree to a point with you. I don't plan on dealing this with my mother or unconcerned parties. But my daughters and I have open communication about issues and since literature shows my history of it may indicate a higher risk for them, I plan on educating them about the factors and annual checks. Also, if the relationship I am in does not work out (We had been in relationship in the past about the time I got my first pap smear results but 2 years before I was told HPV could be a factor), then I would feel I would need to talk about this with any future potential partner before any kind of skin to skin sexual contact including hand to genital.

Just a note for people who are interested in the research, you can find the transcripts from FDA meetings on the proposed HPV vaccine on the net and the one I read was an interesting and informative read.

The vaccine talked about in that transcript targets the strains 16 and 18 HPV as those have the strongest correlation to cervical cancer. There are at least 3 others strains that are mentioned as high risk in other literature.

The test for HPV only checks about 13 of the highest risk HPV viruses out of the approximately 30 known to be based in the sexual organs. Any variation in the DNA structure of the virus can give a false negative reading. There are about 80 strains of the virus that have been fully structured biologically by researchers but are over 100 known strains of this virus some still in the process of deciphering.

I only say this because I read so much in the other strand about waiting for the vaccine. Yes, if found effective enough to put onto the market, it will severely lessen the potential of HPV progressing to cervical cancer but it will not erradicate it. There will still be a need to educate the public about the need to consider our sexual practices, continue pap smears or thinPrep tests on a regular basis, and understand the need to maintain a good immuno system through proper diet and exercise.

From other literature, sexual partners do not pass the virus back and forth continually in sexual contact. Once infected, a person is infected then it is up to their immune system and the strength of the virus what happens from there. If your partner's immune system was able to erradicate the virus, then he is immunized against that strain of the virus and if not, ceasing sexual activity with him will not change what already exists. So women with DH's don't be afraid to enjoy continued relationships with the intimate partner in your life.

What will matter is for those in us at points in our life for new relationships. I want to share my ex's response to the information when I shared it with him because I would like to see him find happiness in the future if he can.

He wrote:
____________________________________________________
"I read the two websites on the subject. It suggests that most (75%) experience this at some point or other. It also says in most cases the body kills off the virus within the first 6 months. For men there seems to be almost no risk associated with it except in rare cases. So either as a personal risk or as a future risk as a carrier it seems the risk (for a man) is very low. On the other hand any future partner would also have their own history to contend with.
I appreciate you making me aware of this but it is not something (at least judging from the literature) that causes me a great deal of concern. So if this is what is troubling you I think you can lay it to rest. You have enough to worry about contending with your own situation."
Talk to you later,"
____________________________________________________

Anyway, I have made the point for the need to continure educaion on this issue but also to not fear your future as there are men who understand that this is not a guilt/blame game.

Peace to all.
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  #12  
Unread 12-21-2003, 07:38 PM
By the way

As to the relationship I was in at the start of this hysterectomy, as he learned more about my cancer and the HPV component of it, he has backed off from me physically and emotionally. Do educate yourself and others. What you don't know CAN hurt you and others. At least I am for the most part a strong and independent person and will go on. He had a right to be kept up on my research though as it effected him too. Be glad for your DH's those who have them. You don't know how lucky you are at this time in your life journey, especially if they are the kind that know their own humanity so can help you feel the acceptance you deserve.
  #13  
Unread 12-21-2003, 09:17 PM
To Hopekeeper

If a woman discovers that she is HPV positive, (as most women will be sometime in their lives), what should she do with that information? What should she change in her life? Most of us get yearly pap smears, is there something else that women with HPV should be doing, other than worrying?

What did you want your ex to do with the information?

Why did you think that the circumstances of your cancer caused him to back off? Did he assume you were a virgin? Was he? Or did he back off because of an inability to deal with your cancer, regardless of how you got it?

I worry about scaring women about HPV if there is nothing they can do about it. What do doctor advise women with HPV to do differently? If nearly all women have HPV, or will have it, then shouldn't all women be taking the same precautions?
Thanks for the information.
Janie
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  #14  
Unread 12-21-2003, 09:40 PM
HPV & guilt

This is just my opinion, but I didn't come to my husband as a virgin, and he didn't come to me as one, so therefore, neither of us can "fingerpoint". It's something I have and something that may or may not have caused my cancer. The women in my family already had a history long before I came along.
As far as guilt, I don't feel guilty, and neither does he. Thank the Lord above that this is not something life threatening (once the cancer is removed) and I will be able to lead a normal life once I'm a princess.
As far as immune things go, my Dr prescribed to me Aldera (?). it is a cream, you use every other day. So far I haven't seen much of a result in the size of the wart, however, I haven't gotten anymore. I've also only been using it for 2 weeks.
I hope everyone else with this horrible disease realizes that you can't change it, or make it go away, all you can do with it is deal with it the best way you know how, and that includes letting go of the guilt and arming yourself with as much information as possible.
Thanks for all the postings...
Cricket

vaginal hysterectomy to be scheduled..keeping ovaries
  #15  
Unread 12-22-2003, 12:29 AM
HPV and the guilt/blame game

This is a discussion of particular interest to me right now. I've had years of normal Paps (other than one slightly abnormal one) and so elected to keep my cervix with my hyst. However, my Pap last summer showed ASCUS (atypical squamous cells of uncertain significance) and HPV-negative (I've always been negative). My most recent Pap showed CIN (not staged yet) and HPV positive. My biopsy is December 29.

Now, my past isn't pristine, by any means, and I didn't get married until I was 37 (I'm my husband's third wife -- but I'm a keeper ). I was actually more surprised by the HPV-negative finding than the positive one. With 70% of us positive, the odds are far higher that we will have it than we won't, even if our current partner has been our only partner.

If so many of us are positive for some strain of HPV, how can there be a "stigma" associated with something so prevalent? Obviously, it's because it's sexually transmitted; if HPV were passed by coughing or sneezing, there'd be no embarrassment associated with that diagnosis. Seven out of ten of us have been infected with this virus; I find it unbelievable that, in this day and age, something so common should be so "charged" with emotional distress. Cancer is hard enough -- one of my friends' has a twin who is dying of cervical cancer. She would not even tell her co-workers that she had cancer. I asked my friend, "what if it were leukemia?" and my friend admitted that her sister would have felt more comfortable explaining that type of cancer than she did this so supposedly "sexual" type. (shaking head in sorrow here) I find that tragic, that ANY illness should be so marginalized, so isolating, that a woman facing the premature end of her life is still too ashamed to share her diagnosis with friends and colleagues.

As for my own situation , I'm waiting for the biopsy to get an answer. To me, it's better to know, and try to strengthen my immune system, rather than bury my head in the sand because of how HPV is contracted.

Hope, I'm glad to see that you're educating your children. We have discussed HIV, even though my DD is young; both my DH and I work with children who have been HIV-infected (I was one of the technical investigators on a huge NIH grant that followed HIV-positive children for seven years). She's familiar with the fact that diseases can be passed in a number of different ways -- including sexually -- and understand that there are ways to protect herself from all illnesses, whether it's by handwashing or by protection in sexual contacts. We've not discussed the details, obviously, but we have made her aware that sex carries with it the responsibility to take care of herself, and that when the time comes, we will make sure that she has what she needs to ensure that protection. But in our household, it's all pretty matter-of-fact. It breaks my heart that those who are reeling from a cancer diagnosis must also deal with the double whammy of shame.

Something that I've found interesting is the statistics of cervical cancer; many women with it haven't had regular Paps, smoking is a huge risk factor (BTW, even if your partner smokes, it's still a risk factor; the metabolites in cigarettes are found in semen), and other risk factors are high, such as socio-economic class and number of partners.

Many doctors do play the "numbers game" and so those of us without that particular demographic profile, non-smokers, may be told that our risk is lower or non-existent. Well, I don't fit any of those risk factors -- yet here I am, waiting for that biopsy next Monday. As Charm says,
  Quote:
All women need to be concerned.


Audrey
  #16  
Unread 12-22-2003, 01:37 AM
Audrey

As a married woman, were you upset that you had suddenly become HPV positive? I think I would be furious at my husband if that happened to me, OR he would have reason to be furious at me! Isn't there only ONE way your HPV status could suddenly change? You seem to be handling far better than I would be.

Are you saying that doctors play the odds and don't do pap smears on some women? Why would they do that? I've been married for 22 years, have always been HPV negative, but my doctor has NEVER suggested that I shouldn't get a yearly pap smear. Is that happening to some women who aren't considered high risk? Are their doctors not doing yearly paps? Why not?

Hugs,
Janie
  #17  
Unread 12-22-2003, 01:48 AM
HPV and the guilt/blame game

I almost feel like I should defend my choice to inform to some of you. That bothers me. All of us can only do the best with what we know. For me, I feel that just because 80% of us may have contacted HPV, there are the 20% who haven't. If I hadn't been in his life, my ex- ( as in ex-husband of over 4 years) walks in circles where a part of that 20% would still exist. He has a right to know about it as does any future partner he chooses and he dealt with it well.

It is my new "friend" who I had been with off and on with for 3 years and more on with for the past months that pulled back as I learned more. My guess? He is shy of the emotional closeness we have built together and this gave him an excuse to pull away. It doesn't make it any easier to take.

So if you were in my place, with no relationship, what would you do in the future with your knowledge of HPV if you were faced with a possible new relationship?
  #18  
Unread 12-22-2003, 09:46 AM
HPV and the guilt/blame game

Janie:

False negatives happen all the time with HPV. I'm sure that I've carried it all along, but my immune system has been stressed by other illness of late, and that probably contributed to my "conversion" -- NOT any "extra-curricular activities" on the part of my DH or myself. As Hopeseeker pointed out in her first post:
  Quote:
The test for HPV only checks about 13 of the highest risk HPV viruses out of the approximately 30 known to be based in the sexual organs. Any variation in the DNA structure of the virus can give a false negative reading.
There ISN"T only ONE way that an HPV can "convert" -- and remarks similar to yours are why so many women are reluctant to discuss this topic. My DH and I never thought that I was cheating just because my HPV turned up positive; as I said on my previous post, we were more surprised at my negative status.

About Pap smears: most doctors only check for HPV when a Pap smear comes back negative. Some recommendations for healthy, monogamous women say that after three normal Paps in a row, a woman can go on to an every-other-year or even every third year status. Some of us are lucky enough to have insurance that will pay for annual Paps, but many HMOs follow the every-other-year schedule.

As far as what to do with any possible new relationship: frankly, I would take the same precautions regardless. It isn't just HPV that is a problem, as you all know, so I would be taking all precautions necessary to avoid catching or transmitting ANY STD. It's also crucial to take good care of your body, so your immune system has a shot at fighting off the effects of the virus as much as it can.

BTW, it's also possible to have false negatives when the virus is dormant, and not expressing itself as abnormal cells on the Pap smear. Please, never make the assumption, when talking with friends, family, or other loved ones, that a sudden HPV conversion is a sign that a partner is "cheating" in a relationship -- to do so is unfair, usually untrue, and contributes to the aura of shame that so many women already face.

Audrey
  #19  
Unread 12-22-2003, 10:41 AM
HPV and the guilt/blame game

Hi All,

Janie-I don't want to pile on, but I agree with everything Audrey wrote. Scientific studies have shown that HPV can lie "hidden" or dormant for up to 20 years before it is activated within the body. There may be several factors that cause this activation, such as smoking or vitamin deficiency. So there are certainly ways other than a new exposure to HPV that someone would "suddenly" show up as positive. Being as that HPV is suspected to be the major contributor in virtually all cervical cancers, it is important to get this information out there so that the stigma and negative connotations will go away!!

As for informing others (past lovers, future lovers, etc.) about your status, there was a thread on this in the past..the link is pasted below, and it might help with this question. It is a very personal decision for which I do not believe there is a right or wrong answer for everyone. It depends on the individual and their personal situation. Hopeseeker-you should do what is right for you, no defense needed. I think that you are a very sensitive and caring person to want to protect important people in your life. But don't beat yourself up over this-I guess I'm not sure why you think your ex would still be in the 20% if not for you--how do you know he didn't pass HPV to you? I don't think you should try to assign blame or anything, I just feel bad that you seem to feel so badly--if that makes sense.

Remember that even if one has the oncogenic type of HPV it is still VERY rare to get cervical cancer in the U.S. due to our screening guidelines. Yes, there are sometimes misses but overall this country has probably the best HPV screening program in the world.

Just as a side note for the HPV vaccine-even vaccinating with HPV 16 and 18 will reduce the burden of cervical cancer by approximately 85% in the U.S. Currently they are working on a vaccine against all of the oncogenic HPV types but they wanted to start with the most common ones. So overall it's an huge step in the right direction.

Whew. This subject never fails to get the blood flowing!! Best wishes to all of you ladies for a wonderful holiday.

Beth
https://www.hystersisters.com/vb2/sho...threadid=95597

https://www.hystersisters.com/vb2/sho...threadid=98305
  #20  
Unread 12-22-2003, 01:46 PM
Confused!

If the tests for HPV aren't any good, and can often yield a false negative, many times over, then what's the point of being tested for it?

Again, what will we do differently if we get a negative reading or a positive reading? My doctors and insurance company want yearly paps. If our HPV test is positive, or perhaps even if it isn't, should we be doing something more than that? Should those who know for certain that they have HPV be having pap smears more often than yearly? What do doctors advise women to do when they have a positive test for HPV?

As for telling a new partner, I can't advise what to do on that. I suppose if he is a virgin, he should know that he is exposing himself to HPV, if we are aware we have it but I'm not even certain about that. It's so individual. If most of the population has it, and it just hasn't shown up yet in the tests for it, I just don't know what to tell you to do. If your ex is dating virgins, then yes, he should probably tell him. OR, he maybe shouldn't be having sex with them?!

Since there is no way to prevent the spread of this virus, (it has been said here that even condoms don't work), what should anyone do? Stop having sex with anyone? Or only have sex with men who we are certain have already been exposed? How would a man know? I have NO idea what to advise anyone on this. What does everyone think we should do? After we tell women they probably have this virus, even if tests say they don't, what do we then advise them to do with this information? About sex, about protecting their own health, and protecting the health of others?

I am very sorry if I made anyone feel defensive, that was certainly not my intent. No one should feel guilty because they've had sex! Sheeze, who hasn't?! I just want to know what we do after we make sure that everyone knows they probably have HPV, even if the tests say they don't. Other than worry, what should they do differently? I agree that information is important, but so is what we do with that information. Is there any way to protect women, and their partners, from this virus? Or is just telling women about it enough? Is there anything else we can advise them to do with the information?

Hugs to all, you are a great bunch of women who are all trying to help other women.
Janie
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