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Old 04-14-2012, 12:32 AM
opalescent opalescent is offline
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Default Dealing with HPV

I wrote in my blog about my diagnosis of high risk HPV. I wanted to throw it out to the forum for suggestions and as blogs aren't supposed to be for that sort of thing, I decided to post it here.

I wrote that I am very unsure of how to handle safer sex where the virus can be passed skin to skin, by touch. I am familiar with safer sex techniques in avoiding fluid exchanges. But touch? That's pretty much the point of sex for me! I am also finding it hard to get information about the risks of certain activities. Every site notes that using a condom helps. Except no one seems to know how much it helps. It didn't help me - I've been rigorous in using condoms and I still got HPV. So my doctor telling me to use condoms is the most useless piece of advice. Yes, already doing that and it didn't help.

The websites I've looked at - the CDC and the San Francisco clinic - are really helpful but don't go far enough. There isn't information on the risks of what I like to do sexually - the risks chart from the SF clinic is great but HPV is mostly in the 'unknown' category. And they don't mention finger or hand fucking or using toys or other activities. I realize that they can't cover everything in a chart. But it is frustrating there is so little reliable information.

So how does one handle the risks of a virus spread by touch? How do I even find out what those risks are so I can tell my partners something reliable so they can judge what they want to do?

Has anyone taken the vaccine? What were your experiences with it? I asked my doctor about it and I am too old for it at 40. But I have heard conflicting information on this - that it just has not been studied in older people so they have no way of judging effectiveness. I have heard about some doctors providing the vaccine to older patients. Mine wouldn't.

Also suggestions on telling partners about this? I did ok in telling my immediate past and current partners, and they were fine for the most part. As I said, Oil Man was freaked but he was certainly not mean about it. Just had lots of questions I mostly couldn't answer. That connection was certainly fading long before this came up so I wasn't surprised that it's fizzled away entirely now.

This has really disturbed me. I do feel ashamed and rather 'icky' even though I have no basis in reality for feeling this way. I have drawn back considerably from pursuing more casual encounters in part because of my diagnosis. I don't know what to tell people to help them judge their risk so I feel weird about casual sex right now. I was kind of moving away from casual sex anyway - lack of time and interest mostly - but this certainly has accelerated that.

I'm also annoyed that no one - broadly not this forum specifically - seems to be talking about HPV. It is so prevalent, but so few talk about it. It can cause serious diseases as well as warts. Doctors seem to know diddly squat about prevention or not passing it to others. Yes, the cancers are relatively manageable if caught early but I've known women who died from cervical cancer. It's still scary.

Ok, rant over. I would appreciate your thoughts, experiences, knowledge on this so much!
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Old 04-14-2012, 02:32 AM
strixish strixish is offline
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I don't know if this will help, but you might consider getting a second opinion, and maybe with a progressive doctor who can actually answer these questions. You might have to pay out of pocket, depending on your insurance (and where you live), but is there a local Planned Parenthood? They may be able to do the testing, or refer you to someone, or help with education.

I do know that the virus can eventually pass out of your system, within two years. Also, 50% of sexually active adults get it at one time or another. Please don't let it make you feel icky. The fact that you are aware of it, and communicating this to your partners, puts you way ahead of most people carrying it.
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Old 04-14-2012, 03:54 AM
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The sort of HPV that is known to cause cervical cancer is not the skin to skin type - That's the kind that causes warts, which you can commonly get from frogs. I'd go to another doc, as the other user suggested, and have them specify the type.
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Old 04-14-2012, 04:39 AM
feelyunicorn feelyunicorn is offline
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I`m waiting for someone, so I can`t wax long in this post right now. Just wanted to offer words of encouragement.

HPV seems to have two faces. One is the face that it isn`t a big deal, mostly an inconvenience, that most people past the age of 30 will have, with little to no symptoms, and except for the relatively rare strains that cause cervical cancer, mostly risk free. And, finally, that most of the warts (and, the virus itself) go away on their own, or do not recur after one or two removals.

The other face of HPV seems to show itself along with many horror stories. Incurable, cervical cancer, throat cancer (transmitted through oral sex), spreading, recurrences of up to 30+ years, devastated egos and sex lives, as well as scarring. HPV is also a lonely disease insofar as it is the least known, even if the most common, of STDs and yet all everyone talks about is HIV and HSV.

The vaccine as well, seems to have two stories. One is that it is effective and risk free; the other, that it has extreme side-effects and is irresponsibly touted by pharmaceutical companies which haven`t even sufficiently tested it or proven its effectiveness.

-----------------------

Fortunately, my case is #1. The mild face of HPV. I contracted it about a year ago. Removed it (a single, small wart that was already decreasing in size on its own when I burned it off), and it did not recur. To my knowledge, I did not infect anyone before or after the diagnosis.

I am past the requisite 6 months after removal, when recurrences are common. Even the scarring is still going away, and is now barely visible. I also contracted it using condoms. The wart popped up at the base of my penis, in my pubic region, where the condom does not reach. The girl who probably gave it to me was a drop-dead gorgeous bombshell.

Initially, I did communicate my infection to two regular partners of mine at the time. Now, I think it would be ridiculous for me to mention it since the risk of transmitting it (or, even of still having it in my bloodstream) is probably just as low as the risk of someone not knowing they`ve already got it.

One thing about HPV is that a lot of people that have it, don`t know they have it. And, I don`t think you should punish yourself for possessing the knowledge. As should be the case anyway, I think if you`ve treated it and are past the recurrence window, it is enough to get tested and show your partners the results if they ask.

I am fairly educated about HPV, especially due to a couple of internet resources. If you`d like me to give you the links, please PM me.

Good luck and I hope you hang in there.
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Last edited by feelyunicorn; 04-14-2012 at 05:04 AM.
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Old 04-14-2012, 05:14 AM
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Quote:
Originally Posted by feelyunicorn View Post
I am fairly educated about HPV, especially due to a couple of internet resources. If you`d like me to give you the links, please PM me.
Why not share the links on the forum for everyone who might need them?
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Old 04-14-2012, 06:25 AM
km34 km34 is offline
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Quote:
Originally Posted by feelyunicorn View Post
Initially, I did communicate my infection to two regular partners of mine at the time. Now, I think it would be ridiculous for me to mention it since the risk of transmitting it (or, even of still having it in my bloodstream) is probably just as low as the risk of someone not knowing they`ve already got it.
I'm curious where you got this info from. Everything I've read says that except for rare cases you carry the virus with you all your life, your body just builds an immunity and the proper antibodies which is why people don't generally suffer many relapses after the initial 6 months.

I got the vaccine when I was in high school. My doctor at the time is in the school of "let's give everyone this thing!" so my sister (20 at the time), mom (39 at the time), and I (17 at the time) all got it together. I felt no pain or discomfort at all, although some people do have some redness and itchiness at injection site. The vaccine, however, only protects from 2 strains that cause warts and 2 strains that cause cervical cell mutations (which can eventually lead to cancer).

I've since been diagnosed with a high risk HPV strain that the vaccine does NOT cover. I had to have a colposcopy after my abnormal pap and they tested the cells to figure out exactly which strain it was. That procedure has been the worst part of my experience with HPV, and honestly it wasn't even too bad since I'm used to bad cramping anyway.

There is basically no way to stop yourself from spreading it unless you want to stop having sex.

I told everyone that I was having sex with and then told any swinging contacts that I had at the time that I was diagnosed. Every single person that I told said they were willing to take the risk of exposure once they read up on the virus. The likelihood of actually developing cancer is slim as long as medical exams are kept up on in a timely manner so if the cells do continue to mutate, they can be removed.

I honestly forget about it most of the time. It has not made a huge impact on my life at all. The people I told all seemed to be aware the HPV is easily spread and that more than likely they would exposed at some point, so I really don't see the point of telling people unless it is someone that I have a long term relationship with so that they can be prepared for the shock of hearing it. I had a couple of (nonsexual) friends who freaked out when they heard, but after reading up on it even they don't find it that frightening. It's really the fear of the unknown that seems to affect people - and all those horror stories they show on tv.

MANY of the swingers I know and have talked to online have had experience with HPV. ALL of the swingers I've talked to say that it is an individual's responsibility to know the risk since a person who has been diagnosed in the past can never really know if they are spreading the virus at the time or not, especially after it has cleared the first time and tests come back clean.

I agree more info needs to be put out there. Readily. Not requiring people to search when they get the diagnosis. All I knew before I got the news was that it could cause cancer. I did NOT know that the chances of that happening are slim even when you've got it. I also did not know that condoms didn't protect you from it. I knew they aren't reliable in HSV (herpes) prevention, but I didn't know about HPV.

My major point: Tell people if you feel the need. Don't if you don't. No reason to feel icky. I've known someone who was born with HPV or managed to catch it from a bathroom (she was diagnosed BEFORE every having ANY sexual contact - even kissing). Like everyone else has said, this virus has managed to stump doctors on many fronts, so until we know more, we can't really worry too much without completely giving up sexual contact. And really, what's life without sex??
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Old 04-14-2012, 12:34 PM
feelyunicorn feelyunicorn is offline
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Quote:
Originally Posted by km34 View Post
I'm curious where you got this info from. Everything I've read says that except for rare cases you carry the virus with you all your life, your body just builds an immunity and the proper antibodies which is why people don't generally suffer many relapses after the initial 6 months.

I got the vaccine when I was in high school. My doctor at the time is in the school of "let's give everyone this thing!" so my sister (20 at the time), mom (39 at the time), and I (17 at the time) all got it together. I felt no pain or discomfort at all, although some people do have some redness and itchiness at injection site. The vaccine, however, only protects from 2 strains that cause warts and 2 strains that cause cervical cell mutations (which can eventually lead to cancer).

I've since been diagnosed with a high risk HPV strain that the vaccine does NOT cover. I had to have a colposcopy after my abnormal pap and they tested the cells to figure out exactly which strain it was. That procedure has been the worst part of my experience with HPV, and honestly it wasn't even too bad since I'm used to bad cramping anyway.

There is basically no way to stop yourself from spreading it unless you want to stop having sex.

I told everyone that I was having sex with and then told any swinging contacts that I had at the time that I was diagnosed. Every single person that I told said they were willing to take the risk of exposure once they read up on the virus. The likelihood of actually developing cancer is slim as long as medical exams are kept up on in a timely manner so if the cells do continue to mutate, they can be removed.

I honestly forget about it most of the time. It has not made a huge impact on my life at all. The people I told all seemed to be aware the HPV is easily spread and that more than likely they would exposed at some point, so I really don't see the point of telling people unless it is someone that I have a long term relationship with so that they can be prepared for the shock of hearing it. I had a couple of (nonsexual) friends who freaked out when they heard, but after reading up on it even they don't find it that frightening. It's really the fear of the unknown that seems to affect people - and all those horror stories they show on tv.

MANY of the swingers I know and have talked to online have had experience with HPV. ALL of the swingers I've talked to say that it is an individual's responsibility to know the risk since a person who has been diagnosed in the past can never really know if they are spreading the virus at the time or not, especially after it has cleared the first time and tests come back clean.

I agree more info needs to be put out there. Readily. Not requiring people to search when they get the diagnosis. All I knew before I got the news was that it could cause cancer. I did NOT know that the chances of that happening are slim even when you've got it. I also did not know that condoms didn't protect you from it. I knew they aren't reliable in HSV (herpes) prevention, but I didn't know about HPV.

My major point: Tell people if you feel the need. Don't if you don't. No reason to feel icky. I've known someone who was born with HPV or managed to catch it from a bathroom (she was diagnosed BEFORE every having ANY sexual contact - even kissing). Like everyone else has said, this virus has managed to stump doctors on many fronts, so until we know more, we can't really worry too much without completely giving up sexual contact. And really, what's life without sex??
I enjoyed reading your post. Thanks for sharing.

From my recollection, I came across multiple online sources (which, I could no longer name at this juncture) that claimed there is controversy whether or not the virus clears in your bloodstream. The doctor who removed my wart claimed there is no way to know whether or not you have the virus unless you have warts...which, I find strange. Anyway, I think I might be more well-informed about HPV than many health care providers at this point.

As I recall, there seems to have been cases in which the virus cleared from blood tests of previously infected persons, but it was unclear whether it was simply because the virus levels were so low (suppressed by the immunological system) that blood tests could not capture it, or that the virus indeed goes away completely after the 6 months - 2 year mark.

I also don`t know how significant that is even if it does not clear since, apparently, our blood carries many different viruses for life, including the flu virus, etc. But, they aren`t necessarily active.

I`m pretty sure that`s the information I got from what seemed to be reliable sources at the time. But of course, I`m not an authority on the topic.

--------------------

No doctor, of the 3 or 4 that I asked personally, and one M.D. from an HPV website, recommended that I notify casual partners about my infection after the 6 months. None.

In fact, in my STD tests, it also shows that I have been exposed to HSV but that it is 'inactive.' Although, I have only had a single instance of cold sore (mouth) when I was 19 years old after I lost my virginity. I have never had any genital symptoms.

When the numbers of partners I`d been with started getting above average, and I began freaking out about STDs, I asked a doctor about the HSV results, as well. I specifically asked whether or not I should notify every single partner of it, as I was afraid that would severely limit my sex life.

He shrugged, and said, "That`s not significant. Everybody`s got herpes. The Pope`s got herpes. Jesus has got herpes. The Virgin Mary, probably`s got it! Just use the condom, son."

So, in a sense, HSV and HPV are related viruses. Most people will contract them, most are asymptomatic to mildly symptomatic. And, the symptoms usually to ease or disappear altogether with time. Barring the horror stories previously discussed.

I believe, if you are having a fly-by-night fling, and are asymptomatic (which, for genital herpes would be after shedding), it is laughable to notify that person.

The casual partner probably`s got it anyway (whether or not they are aware of it), and in any event, it is as much his/her responsibility to ask for tests as it is yours show them to him/her. Casual sex comes with certain risks that I assume any casual partner should be aware of. And, in the words of the pornstar Chloe, "After you`ve been in this industry for a while, you`ve got herpes. It`s as simple as that." If you substitute 'in this industry' for 'with a certain amount of partners', the truism seems to still hold.

As for long-term partners, I assume you would get tested together and then discuss your tests at length, so both can make informed decisions. And surprise, surprise! It is not unlikely that your partner will also show asymptomatic exposure to the above viruses.

If you are symptomatic, however, dating someone who`s also symptomatic might be an option. I`m not sure.
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Last edited by feelyunicorn; 04-14-2012 at 12:44 PM.
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Old 04-14-2012, 04:42 PM
Hannahfluke Hannahfluke is online now
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Originally Posted by opalescent View Post
Has anyone taken the vaccine? What were your experiences with it? I asked my doctor about it and I am too old for it at 40. But I have heard conflicting information on this - that it just has not been studied in older people so they have no way of judging effectiveness. I have heard about some doctors providing the vaccine to older patients. Mine wouldn't.
When I told my doctor about my poly relationships last fall, he recommended that I get the vaccine, even though I was 38 at the time and have since turned 39. His opinion is that, since I'm at higher risk just due to having multiple partners, it could not hurt to have it done. My insurance did not cover the first shot but the doctor's office billed it differently for the second shot and it was covered. I've thought about calling the insurance to see if they'll change the decision for the first shot but I'm afraid that it'll just make them change their mind on the second one. So your insurance may not pay for it, but my doctor at least felt like it was worth it.

Last edited by Hannahfluke; 04-14-2012 at 06:03 PM.
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Old 04-14-2012, 05:00 PM
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I found the old thread discussing HPV here:

HPV - Shouldn't we talk about it?

It goes from 2009 to 2010, starts off about HPV, veers off into herpes a few times, but there are more recent posts at the end of it which talk about HPV. Thought there might be some useful info there.
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Old 04-14-2012, 06:27 PM
strixish strixish is offline
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Take all of this with a grain of salt, and as a starting point for research into scientific sources (even my points). I am pretty sure you can't get warts from frogs.
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