Diagnosed with High-Risk HPV. What to do?

I was recently diagnosed with a strand of high-risk HPV (not either of the 2 riskiest that the vaccine covers, one of the others that can cause cancer). I have low-grade dysplasia, but the doctor is optimistic that my body will clear it up on its own since I am only 22 and otherwise healthy.

My question is... What should I do? My husband and I have been in the lifestyle for about 4 years. We have one couple we play with regularly and are very good friends with, so I know I am going to tell them for sure. She needs to know that she has been exposed and could be at risk for developing cervical symptoms in the future, even if she doesn't have any now. BUT do we need to tell any and all future playmates? Part of me would feel guilty for spreading the risk to other women, but the likelihood of actually developing cancer is low, and it can usually be caught and treated before actually turning into cancer as long as a woman gets regular paps.

Would you want to know that you're being exposed?

Stop play now.

Get tested regularly.

In about two years, see if there are any symptoms left.

Untreated the normal course of the infection is two years or so. DO NOT PLAY for two years. After that time period you can think about playing again if you are clear.

We don't plan on playing at all until my paps have cleared, but the problem is my husband is a carrier now, I am a carrier now. Should we just stop playing for good unless it is with close friends who understand the risk?

Stop play now.

 

Get tested regularly.

 

In about two years, see if there are any symptoms left.

 

Untreated the normal course of the infection is two years or so. DO NOT PLAY for two years. After that time period you can think about playing again if you are clear.

That's not the information I've gotten from my doctor at all Chicup. There is no HPV test, you just go back 2x a year for paps instead of 1x a year. Either the results come back normal, weird for something else, or weird for cervical dysplasia. Cervical dysplasia is ONLY caused by HPV.

Km34, my doctor told me when I voiced my concerns about HPV was the following: Many woman have one weird pap come back sometime in their 20s, and never have another issue again related to the cervical dysplasia.

Given the lack of testing in both men and women, it's impossible to tell if you still have the virus at this time. Most people generally clear the virus in 12-24 months.

My doctor told me specifically to make sure all the women you know that are sexually active are getting a yearly pap done and keeping up to date with the rest of their standard screening.

You have the option of stopping play.

You have the option of continuing to play.

I would suggest however, letting any and all sexual partners you've had recently know about your pap and have any women you know make sure they get their yearly exam done. Your partners can then make a decision to stop play with you, or continue. Who knows if they have also had weird paps come back and they've neglected to tell you about it (although I'd probably stop playing with people who didn't offer up this information when they found out).

Condoms do not prevent the spread of HPV. The reduce the likelihood of being exposed, but do not eliminate it. It can be transferred skin to skin.

Also, HPV can lie dormant in the system for over 5 years, sometimes up to 10 before causing anything weird to happen (i.e. abnormal paps). By the time you present with an abnormal pap, you could have already cleared the virus, it's just taken that long to show up in your system.

My doctor told me this "it is an unrealistic expectation to stop people from having sex over this. It is an epidemic. By age 45, over 85% of sexually active women will have some strain of HPV and we don't know the numbers in men."

Basically, if you are having sex, you most likely will run into this. It isn't something you have to shut down completely over, you just need to be aware of your own health and the health of your partners.

Make sure you do a lot of research, your doctor should be able to tell you MORE than everything you need to know, they are an invaluable resource, give your doctor or nurse or PA a call. They should be able to direct you to any resources you'd need.

We don't plan on playing at all until my paps have cleared, but the problem is my husband is a carrier now, I am a carrier now. Should we just stop playing for good unless it is with close friends who understand the risk?

Your husband may or may not be a carrier, there is no way to tell HPV status in men at this time unfortunately.

MsGoneWild, we just assume he is carrying it since he has had unprotected sex with me who knows how many times and I have had it in my system for who knows how long since this year is the first time I've ever had an abnormal pap or an HPV test (my old doc didn't do them unless there was an issue).

I am going to go with my gut feeling of not playing with anyone new for a while, current playmates will be informed and can decide what they want to do.

If someone told you they had a history of HPV, would you cut off all sexual relations? I guess my concern is that people will automatically say no. I would rather just stop swinging all together than face unquestioning rejection from EVERYONE. lol

I'm quickly becoming convinced that HPV is the most misunderstood malady in the history of maladies. Here are the facts of HPV. If you're sexually active, you probably have it. Or had it. Or will catch it. Probably multiple times. The ONLY way to prevent HPV infection in celibacy, which is certainly a choice, but going from swinger to nun is a tough road.

Obviously as a sexually active person, and especially as we swingers are more, umm, "active" then your typical person, we have a responsibility to be vigilant about the state of our health. Part of that is UNDERSTANDING and EDUCATING ourselves about what is out there, or in your case, allegedly in you.

You will weed out those who can look up info and assess the risks vs those who just plain freak out over a virus that most, if not all, sexually active with more than one partner, are exposed to.

The good news is, if any are left to play with, then you will have playmates who do not have their heads in the sand over the risks and accept them and still are out to enjoy and live life doing what they enjoy.

In other words, don't sweat the rejection.

MsGoneWild said:

That's not the information I've gotten from my doctor at all Chicup. There is no HPV test

There is an HPV test for women, but not for men. They can do a DNA test on abnormal cells to determine whether it's HPV and what strain it is. Typically the abnormal cells are detected in a pap test, but they can do further tests to verify and confirm the strain etc.

From a physician...

1. HPV has been around forever. We now understand that is an STD.

2. Molecular diagnostics, including DNA testing, is quite new on the scene. The usual approach is to amplify the DNA using some form of the polymerase chain reaction (PCR)--a technique that earned its discoverer the Nobel Prize.

3. The amplification technique allows reliable discrimination among the various strains of HPV. The strains are split into high risk and low risk.

Please see this official US government site at the CDC link. You will be surprised to learn that 3/10 women in your age group are positive for a high risk HPV. Around half of women will have a genital HPV infection in their lifetime.

Swingers can assume they carry HPV until proven otherwise. Folks in casual relationships can assume they carry HPV until proven otherwise. People in long-term monogamous relationships have a reasonable probability of being HPV positive. Again, look at the data.

The problem is not HPV infection per se. It is that HPV predisposes to cancer. We now believe that nearly all cervical cancers are HPV-related. Your responsibility is to follow the recommendations of an OB/GYN you trust. S/he will increase surveillance with more frequent examinations and Pap smears. If you have persistently abnormal Pap smears, s/he will recommend a biopsy in the form of LEEP or a cold conization. This is a routine office procedure and leaves you uncomfortable for maybe 24 hours. None of this is new.

The more scary aspects of HPV infection surround the rise in oral cancers. I have two professional colleagues--one a distinguished surgeon, the other a distinguished researcher--who at relatively young ages (late 40's/early 60's) -- developed oral cancers in the past 3 years. Neither of them ever smoked. Both were HPV positive. One is now disease-free, the other is in hospice care and will not see Christmas. The latter was in denial about a change is his exam and sought medical advice late. There really is an uptick in HPV+ oral cancers. Dentists are looking carefully during regular oral exam/tooth cleaning sessions and referring to appropriate physicians.

Bottom line, HPV is really quite common. Cancers from HPV, while rare, are important to detect and treat.

slevin said:

There is an HPV test for women, but not for men. They can do a DNA test on abnormal cells to determine whether it's HPV and what strain it is. Typically the abnormal cells are detected in a pap test, but they can do further tests to verify and confirm the strain etc.

You are correct on this, I did forget about that information.

They do not do any testing unless you get a weird pap back though, you don't just go to the doctor or clinic like you would with any other STI and get a test though.

What is the difference between a "High Risk" vs. "Low Risk" strain?

We came across a very thoughtful profile were the woman explained here HPV infections quite publicly. We had online chats with her and seriously considered playing with her. As things go with us, we got busy and it never worked out. But from what we can tell, she's been very active. If and when you are ready to play again, we suggest you go that route. At least you'll know when couples email or respond that they will know about your issue. Good luck!

What is the difference between a "High Risk" vs. "Low Risk" strain?

The low risks can cause warts, the high risks are more prone to cause cancer.

Thanks for the insight, all! I have already told quite a few people that I know in the swinging lifestyle and every single one of them have told me that it would not change their opinion.

Random comments about others' posts:

My doctor actually told me that they will perform HPV test on ANYONE who comes in to get her annual pap and says that she has been sexually active with more than one person.

As for the high risk HPV causing cancer, I actually talked to a specialist about this while I was in the office. He told me that while HPV abnormalities can turn into cancer, they normally won't. Why? Because they are generally found so early that they are taken care of before they morph that far. If left untreated, a woman could develop cancer in about TEN years. So, as long as you're going in for your annual, you should be quite fine. The lesson here (at least for me)? Don't stress about HPV itself, just be proactive when it comes to your health.

exploringRM said:

The low risks can cause warts, the high risks are more prone to cause cancer.

This is not true.

Low risk and high risk refers to how likely the dysplasia is to cause cancer, not genital warts. The strains of HPV that cause warts do not (generally) cause cancer. They are separate issues.

If you have low grade dysplasia, the cell changes are very few, and aren't far from normal. The higher the grade of dysplasia, the further along the cell changes have progressed. The cellular changes can eventually lead to cervical cancer. As KM34 already stated, cervical cancer is rare to occur if you get yearly paps done because it is generally caught very early.

If you have genital warts, it is a different strain of HPV. Hopefully this quoted paragraph below can clear some of the information up. It's is from wikipedia (i know wiki, but the information is on par with what I have talked about with my doctor).

From here exactly, Cervical cancer - Wikipedia, the free encyclopedia

"More than 150 types of HPV are acknowledged to exist (some sources indicate more than 200 subtypes).[12][13] Of these, 15 are classified as high-risk types (16, 18, 31, 33, 35, 39, 45, 51, 52, 56, 58, 59, 68, 73, and 82), 3 as probable high-risk (26, 53, and 66), and 12 as low-risk (6, 11, 40, 42, 43, 44, 54, 61, 70, 72, 81, and CP6108).[14] Types 16 and 18 are generally acknowledged to cause about 70% of cervical cancer cases. Together with type 31, they are the prime risk factors for cervical cancer.[15]

Genital warts are caused by various strains of HPV which are usually not related to cervical cancer. However, it is possible to have multiple strains at the same time, including those that can cause cervical cancer along with those that cause warts. The medically accepted paradigm, officially endorsed by the American Cancer Society and other organizations, is that a patient must have been infected with HPV to develop cervical cancer, and is hence viewed as a sexually transmitted disease (although many dispute that, technically, it is the causative agent, not the cancer, that is a sexually transmitted disease), but most women infected with high risk HPV will not develop cervical cancer.[16] Use of condoms reduces, but does not always prevent transmission. Likewise, HPV can be transmitted by skin-to-skin-contact with infected areas. In males, there is no commercially available test for HPV, although HPV is thought to grow preferentially in the epithelium of the glans penis, and cleaning of this area may be preventative."

MsGoneWild, I have actually gotten the exact OPPOSITE info. While the dysplasia is explained as low-, mid-, or high-grade, HPV itself is either high or low risk. High risk has the potential of developing into cancer, low risk has the potential to cause warts or more commonly has no symptoms at all. These are three sites I've been recommended to when I FINALLY caught a sympathetic ear at my doctor's office.

Women's Health HPV Fact Sheet

"What is the difference between the high-risk and low-risk types of HPV?

Some types of HPV can cause cervical cancer. These types of HPV are called high-risk. Having high-risk HPV is not the same as having cervical cancer. But high-risk HPV can lead to cancer. Most often, high-risk HPV causes no health problems and goes away on its own. High-risk HPV cases that don’t go away are the biggest risk factor for cervical cancer. If you have high-risk HPV, your doctor can look for changes on your cervix during Pap tests. Changes can be treated to try to prevent cervical cancer. Be sure to have regular Pap tests so changes can be found early.

Low-risk HPV can cause genital warts. Warts can form weeks, months, or years after sexual contact with an infected person."

The HPV Test website

""Low-risk" types of HPV

There are about 12 types of HPV that are called "low risk" because they cannot cause cervical cancer. They can, however, cause genital warts or very minor cell changes on the cervix. These low-risk types of HPV are known by the numbers 6, 11, 40, 42, 43, 44, 53, 54, 61, 72, 73 and 81. Types 6 and 11 – which are linked to about 90 percent of genital warts – are the most common.

"High-risk" types of HPV

There are more than a dozen types of "high-risk" HPV that can cause abnormal cells to form on the cervix. These abnormal cell changes may gradually develop into cervical cancer if not removed. The 13 types of high-risk HPV that are of most concern are known by the numbers 16, 18, 31, 33, 35, 39, 45, 51, 52, 56, 58, 59 and 68. Types 16 and 18 are the most dangerous, since they cause about 70 percent of cervical cancers. In one study, the National Cancer Institute found that about 10 percent of women with HPV type 16 or 18 developed advanced, pre-cancerous cervical disease (CIN 3) within three years (compared to just 4 percent of women with any type of HPV), and 20 percent did so in 10 years (compared to 7 percent)."

Cancer.gov

"Are specific types of HPV associated with cancer?

Both high-risk and low-risk types of HPV can cause the growth of abnormal cells, but only the high-risk types of HPV lead to cancer. It is important to note that the great majority of infections with high-risk HPV types go away on their own and do not cause cancer"

Either way, I don't think it's necessarily important to know the semantics. As long as you know the risks that HPV can pose and take steps to protect yourself (as much as possible with a virus that you can pick up so easily) and get treatment if necessary. Either way you look at it, some HPV can eventually lead to cancer so you want to make sure you (and/or any women you are with) get annual paps and be aware of any oddities in your sexual/reproductive health. Some HPV can cause genital warts so you want to be aware of visual oddities. Some HPV causes no symptoms whatsoever.

These are always challenging conversations for medical professionals.

What matters most here is not the low risk/high risk conversation but rather that the thread started with an abnormal Pap smear. The abnormal Pap smear is a trigger for increased surveillance looking for cervical cancer until the abnormal Pap is resolved.

The HPV conversation comes up only in the context of what you should tell a potential playmate, and it's very hard to imagine a situation that dictates going beyond "HPV positive" if disclosure becomes your choice. Given the prevalence of HPV, people in the LS sort of accept ---knowingly or unknowingly---that exposure.

A few interesting comments here. And, we've done a ton of reading. So far, one question burns in our mind for which we haven't gotten a firm answer.

We've been in the LS for less than three years. During her recent annual, she is diagnosed with high-risk HPV. Follow-up colposcopy refines the dx as CIN 1. Even though we are in our 50's, it appears likely that she'll clear.

What is unclear to us is whether it is a bad idea for the two of us to have unprotected sex for the time being. Would doing so have the effect of re-infecting her?

We're interested in responses from anyone who knows the answer here; not from people who think they know or want to offer advice based solely upon their opinion. Don't mean to sound rude, but message boards are full of uneducated opinions passed off as fact.

Weplay..... you lecture me on not knowing what I'm talking about and THEN you ask if you can re-infect?

I'm going to give you an answer even though you think I'm wrong, but then this answer would be obvious to anyone with a bit of biology training *ahem*.

No you can't reinfect and play 'swap the HPV', you can't give it back to her, she has it.

No matter what, she has HPV for life. It is a virus that the body will fight, but it is always there even if it is dormant. Unprotected sex is NOT known to be a trigger for an HPV outbreak (whether it is high or low risk is irrelevant). However, if your wife is likely to get stressed out or has hormonal issues or anything like that, she may wind up having symptoms again in the future. There is also the very likely possibility that anyone she has sex with (protected or unprotected) will pick up the virus. I've told all of my sexual partners. I just felt like I needed to.

I read your question to mean that you wanted to know if having unprotected sex is going to cause her to end up with another abnormal pap: The short answer is no (to my understanding), but she may end up there due to other variables causing the virus to reactivate and affect the cervix again.

I don't think that we know everything we need to know about the virus.

I'd still want to go bare with my spouse and not sweat it....just keep getting tested and live to enjoy life now....as long as you both agree to the risk, just enjoy each other.

Life is too short to sweat the small stuff....or to sweat the stuff we do not know for sure.

YMMV

No matter what, she has HPV for life. It is a virus that the body will fight, but it is always there even if it is dormant. Unprotected sex is NOT known to be a trigger for an HPV outbreak (whether it is high or low risk is irrelevant). However, if your wife is likely to get stressed out or has hormonal issues or anything like that, she may wind up having symptoms again in the future. There is also the very likely possibility that anyone she has sex with (protected or unprotected) will pick up the virus. I've told all of my sexual partners. I just felt like I needed to.

 

I read your question to mean that you wanted to know if having unprotected sex is going to cause her to end up with another abnormal pap: The short answer is no (to my understanding), but she may end up there due to other variables causing the virus to reactivate and affect the cervix again.

I didn't phrase my question correctly, but you nailed it, KM.

You said one thing that surprised me: that even protected sex carries a "very likely possibility" of infecting. This being the case, I would say it's a "very likely possibility" that our swinging days have ended after only a couple of years.

Chicup... believe me when I tell you that you've not been lectured. I simply disagreed with a statement you made. I'm sorry your ego got injured in the process. I trust the damage isn't permanent.

It's a message board. Not everyone is going to agree with everything you say. Unless you own the exclusive rights to free speech here, deal with it.

I didn't phrase my question correctly, but you nailed it, KM.

 

You said one thing that surprised me: that even protected sex carries a "very likely possibility" of infecting. This being the case, I would say it's a "very likely possibility" that our swinging days have ended after only a couple of years.

I'm glad I could help, or at least give you some insight.

Personally, HPV hasn't stopped me from swinging. Sure, some people immediately dismiss me as a possible playmate, but most are VERY understanding and are willing to take the risk. As long as women get their annual paps so that any abnormalities are caught early, cervical cancer is very rare.