HPV Questions

Posted by betsyp @betsyp, Jul 30, 2020

I'm surprised to find no discussions about HPV here. I am a 58 year old woman who was recently diagnosed with HPV-18, one of the two strains of HPV that can lead to cancer. Luckily my pap was clear so no problems yet. I have done lots of reading to get my questions answered, but I haven't found definitive answers to some of my questions. Experts talk about HPV being so common that the vast majority of adults will have it at some point, so it is not worth worrying about, but that advice seems problematic with HPV-16 and 18. Women can get regular testing along with pap smears to see if there are cellular changes but there isn't testing for men. My boyfriend is scared by the possibility of getting cancer, so he broke up with me. I can understand his reaction, although I think it is likely he gave it to me and/or that I have already transmitted it to him. So while many strains of HPV are "no big deal," HPV-18 is a very big deal to me. I have read repeatedly that HPV usually clears from the body within two years. Here are my questions: 1) If I find that my HPV-18 has cleared and I have negative results, does this mean that I won't transmit it to someone else? 2) Is it gone or just dormant, and I may have a recurrence? 3) Am I still more likely to develop cervical (or other) cancer? 4) What are my ethical obligations to tell a partner, both while I test positive and later if I test negative? I feel like this diagnosis means an end to my sexual life, as I wouldn't want to give this to anyone. And the kicker is that safe sex doesn't even prevent HPV transmission, as it is transmitted by skin contact. I hope someone can point me to peer-reviewed studies or other credible resources that answer my questions. Thanks.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

Hi @betsyp Thank you for joining Mayo Connect and welcome! You are correct in saying there are not many groups currently discussing Human papillomavirus (HVP) right now, but that's not to say people are not experiencing it. You will notice that I added your discussion to the women's health group and the men's health group to reach more members in related discussions. I understand your heightened concerned and that it is and can be a very big deal for people diagnosed with HPV-16 or 18. I am also so sorry that your boyfriend broke up with you because of this. One of the most important aspects of coping with HPV, and helping partners develop a good understanding of the virus, is getting factual information and avoiding myths and hype. It may also be a good idea to have resources to which you can direct him, so you know he can turn to trustworthy sources for information. (National Cervical Cancer Coalition NCCC). I highly recommend seeking out brochures or a second opinion because even though having been diagnosed with HPV 18 you were recently cleared, correct? Even in people whose HPV persists, the time from infection with a high-risk HPV type to the development of cancer is generally measured in years IF at all. Most specialists I have seen say upwards of 10 and that is only if the infection persists. I hope some of the information below will ease your mind a little.

This is a great go to page for sharing real and important, sometimes overlooked information about HVP.
https://www.nccc-online.org/hpvcervical-cancer/hpv-and-relationships/

I highly recommend reading this article and scrolling to the section labeled "HPV Is Common, Yet Commonly Misunderstood" https://www.everydayhealth.com/hpv/what-are-hpv-16-18/

In this study it shows that 92% of the US specimens tested positive at one time or another.
https://europepmc.org/article/med/3029642

I will continue to help you research and if I find additional information I am more than happy to share. Betsy, can you tell me, did you doctor find this diagnosis while performing a routine PAP or were you having symptoms?

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@betsyp, you may also be interested in this related fact sheet that is helpful and a discussion from a while back from a member (@lcmtc) who was facing a similar problem that you might want to read.
https://connect.mayoclinic.org/discussion/anal-pre-cancer-with-hpv-1618/

https://www.cdc.gov/std/hpv/stdfact-hpv.htm
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@amandaa

Hi @betsyp Thank you for joining Mayo Connect and welcome! You are correct in saying there are not many groups currently discussing Human papillomavirus (HVP) right now, but that's not to say people are not experiencing it. You will notice that I added your discussion to the women's health group and the men's health group to reach more members in related discussions. I understand your heightened concerned and that it is and can be a very big deal for people diagnosed with HPV-16 or 18. I am also so sorry that your boyfriend broke up with you because of this. One of the most important aspects of coping with HPV, and helping partners develop a good understanding of the virus, is getting factual information and avoiding myths and hype. It may also be a good idea to have resources to which you can direct him, so you know he can turn to trustworthy sources for information. (National Cervical Cancer Coalition NCCC). I highly recommend seeking out brochures or a second opinion because even though having been diagnosed with HPV 18 you were recently cleared, correct? Even in people whose HPV persists, the time from infection with a high-risk HPV type to the development of cancer is generally measured in years IF at all. Most specialists I have seen say upwards of 10 and that is only if the infection persists. I hope some of the information below will ease your mind a little.

This is a great go to page for sharing real and important, sometimes overlooked information about HVP.
https://www.nccc-online.org/hpvcervical-cancer/hpv-and-relationships/

I highly recommend reading this article and scrolling to the section labeled "HPV Is Common, Yet Commonly Misunderstood" https://www.everydayhealth.com/hpv/what-are-hpv-16-18/

In this study it shows that 92% of the US specimens tested positive at one time or another.
https://europepmc.org/article/med/3029642

I will continue to help you research and if I find additional information I am more than happy to share. Betsy, can you tell me, did you doctor find this diagnosis while performing a routine PAP or were you having symptoms?

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Thank you, Amanda. I appreciate you looking for information for me. My doctor discovered the HPV-18 when doing a routine pap and HPV test. The pap was normal, so I wouldn't have known about the HPV diagnosis if she hadn't done the HPV test in conjunction. This diagnosis was just a few months ago. The HPV hasn't cleared, although I hope that it will in 1-2 years.

The first two articles you linked are very good, although they didn't contain new information for me. I understand that the likelihood of cancer developing is relatively low, and I can have regular paps to look for changes in the cells. But there doesn't seem to be any testing available for men, so they are unable to be vigilant about checking for cellular changes.

I still have the same questions I first posted, so maybe I will get more responses.

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Thanks for bringing up the chat. I contracted hpv from my boyfriend who I lost my virginity to. He of course had no clue he had it as there are no tests for men. And I being anxious about something I was vaccinated to protect myself against have looked all over the internet and ultimately have scared myself more. I have seen my pcp who discovered it during my first pap and a follow up obgyn. Given my age it was only recommended I do routine once a year paps for now. If the virus is gone by my next one then I’m all set but if not I will have to go for further treatment to prevent cancer. From my understanding, you can carry it but the virus can also lay dormant in your body. When it is active you can transmit it regardless of condom use. I told my partner right away but we also have only been sleeping with each other for the past year so I can’t really speak to ethical obligation. As far as the cervical cancer part, my doctor ensured me that it takes many years to develop. And that the routine paps are required to ensure they could nip something in the butt if it were to ever start to develop.

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@amandaa

Hi @betsyp Thank you for joining Mayo Connect and welcome! You are correct in saying there are not many groups currently discussing Human papillomavirus (HVP) right now, but that's not to say people are not experiencing it. You will notice that I added your discussion to the women's health group and the men's health group to reach more members in related discussions. I understand your heightened concerned and that it is and can be a very big deal for people diagnosed with HPV-16 or 18. I am also so sorry that your boyfriend broke up with you because of this. One of the most important aspects of coping with HPV, and helping partners develop a good understanding of the virus, is getting factual information and avoiding myths and hype. It may also be a good idea to have resources to which you can direct him, so you know he can turn to trustworthy sources for information. (National Cervical Cancer Coalition NCCC). I highly recommend seeking out brochures or a second opinion because even though having been diagnosed with HPV 18 you were recently cleared, correct? Even in people whose HPV persists, the time from infection with a high-risk HPV type to the development of cancer is generally measured in years IF at all. Most specialists I have seen say upwards of 10 and that is only if the infection persists. I hope some of the information below will ease your mind a little.

This is a great go to page for sharing real and important, sometimes overlooked information about HVP.
https://www.nccc-online.org/hpvcervical-cancer/hpv-and-relationships/

I highly recommend reading this article and scrolling to the section labeled "HPV Is Common, Yet Commonly Misunderstood" https://www.everydayhealth.com/hpv/what-are-hpv-16-18/

In this study it shows that 92% of the US specimens tested positive at one time or another.
https://europepmc.org/article/med/3029642

I will continue to help you research and if I find additional information I am more than happy to share. Betsy, can you tell me, did you doctor find this diagnosis while performing a routine PAP or were you having symptoms?

Jump to this post

I was tested positive for hpv 16 ...after 2 years later I did another pap test I was all cleared no detection everything was normal...

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That happened to me too @paulette66 I have no idea why.

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4 years ago I was diagnosed with VIN1. A short time later I had ablation surgery but even after the surgery I was still having symptoms. I returned to my doctor for 2 more biopsies to confirm I was cleared and both my biopsies were good. However, I wasn’t better and after 4 years I’m still not better. I have made repeated visits to my gynaecologist at which time he prescribed several creams that did not help. After discussing with him that I felt like it was on a cycle he put me on Lupron. He thought if he threw me in to menopause the problem would be solved. It was not. It helped but it did not fix the problem. Now I am left wondering what more can be done. Where else can I turn because I have left that doctor only to be put on a year long waiting list to a different doctor in hopes that she will listen and hear me rather than just shuffle me out the door with another cream that I already tried numerous times before. So I’m here with hopes that I can get some good clear advice or an answer or a suggestion. Anything really that may put me in a direction of healing. I am a 49 year old woman with a crappy quality of life and quite frankly I’m at the end of my rope. Thanks for taking the time to read this all the way through

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@lostlady

4 years ago I was diagnosed with VIN1. A short time later I had ablation surgery but even after the surgery I was still having symptoms. I returned to my doctor for 2 more biopsies to confirm I was cleared and both my biopsies were good. However, I wasn’t better and after 4 years I’m still not better. I have made repeated visits to my gynaecologist at which time he prescribed several creams that did not help. After discussing with him that I felt like it was on a cycle he put me on Lupron. He thought if he threw me in to menopause the problem would be solved. It was not. It helped but it did not fix the problem. Now I am left wondering what more can be done. Where else can I turn because I have left that doctor only to be put on a year long waiting list to a different doctor in hopes that she will listen and hear me rather than just shuffle me out the door with another cream that I already tried numerous times before. So I’m here with hopes that I can get some good clear advice or an answer or a suggestion. Anything really that may put me in a direction of healing. I am a 49 year old woman with a crappy quality of life and quite frankly I’m at the end of my rope. Thanks for taking the time to read this all the way through

Jump to this post

Hi,
What exactly does V1N1 mean?

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yes, I had it. I just was diagnosed with HPV 18 A positive, which is cancerous or precancerous cells. They are scheduling me for a Colposcopy and I am not doing it. I've had cancer twice (colon rectal and radical hysterectomy) and unless the doctor puts me out or gives me twilight sleep, I will never endure that pain again. After that Colposcopy, in 2007, and I never had cancer again until 2020, because at the time, she just cut out whatever it was with no anesthesia. I blacked out. You may not have the same reaction though so go for it as I am a blue-eyed redhead and our pain threshhold is different.

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If you do contract HPV 6 or HPV 11, your doctor can prescribe medications such as imiquimod (Aldara, Zyclara) or podofilox (Condylox). These are topical medications that destroy genital wart tissue.

This local destruction of the wart tissue helps enhance your immune system’s ability to fight the STI virus. You can apply these medications directly to your genital warts.…

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