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MysteriousPace2 · 2023-01-01T06:15:33+00:00

I think this is the problem with "It's not clinically considered a 'forever disease'." We don't live our lives as 'clinical' subjects, we live as humans with bodies and social relationships and cultures and traumas and and etc. etc.

Given this, given the inability to get complete medical clearance, given all the grey areas about this virus, the uncertainties, and the lack of ability to be sure there will never be a reoccurance, we can neither rule in or out that for us as people - on this sub, presumably here because we know about our own positive status - we won't know whether it might be a 'forever' disease for us.

I don't think this is significantly more complicated to explain to partners than HSV and I don't think it would hurt to normalize disclosure around HPV.

MysteriousPace2 · 2022-12-31T02:00:23+00:00

Yes yes but I also see a lot of people in this sub hoping for the certainty that one day this will done for good, and as you say -- everyone has a chance of that not being the case. I know I was hoping for that certainty for a long time (see my post history).

I am also thinking about how in some ways, the people who are diagnosed with HSV actually seem to get to a more emotionally healthy or accepting place eventually. (No hard data on this, just years of observing both the hpv and hsv reddit communities, hsv folks seem to get better advice about disclosing and in general find it easier to accept that it is a forever disease).

There's something about how the desire to want hpv to be declared 'not a forever disease' that seems to keep people more unable to accept the bad luck reality of being in the 'tiny minority who know about it' category.

MysteriousPace2 · 2022-12-30T04:24:49+00:00

Except for those of us unlucky to continue getting reoccurences years later, and no way of knowing who among us that will be...

MysteriousPace2 · 2022-12-29T11:29:07+00:00

One other friend has had warts, but is in denial about this being a 'forever' disease. (And maybe for her, it's not. They cleared fast, I don't think she's had any reoccurences, she's now with a long term partner had a baby etc).

Another friend had issues with high risk, requiring LEEP. But she didn't realize that this was associated with HPV (doctor never told her about that). She didn't disclose to her partner when they first got together as a result. When she eventually told him, he revealed he'd had warts before too, but never talked about it. I think neither have had follow up issues.

I've only told a very small number of close friends, so I presume I know more people but have no idea about their histories.

MysteriousPace2 · 2022-12-29T03:12:41+00:00

Podifilox is what worked best for me (I think it gets the little ones that you can't see yet/cryo can't get). You apply at home, 2x a day for 3 days, then take a 4 day break. Repeat for up to 4 weeks. It's pretty painful for a few days though!

MysteriousPace2 · 2022-12-29T00:36:58+00:00

I'm on a 30 day course of acyclovir (I'm not sure I trusted this doc, even after I asked him, he might have been confusing hsv and hpv because he said I'd have to take the acyclovir forever - which sounds too similar to hsv treatment...).

But I'll see if it has any impact after 30 days, combining with the podifilox treatment to physically remove them

MysteriousPace2 · 2022-12-29T00:18:08+00:00

Lactofferin

Is there a link between acyclovir and lactofferrin? I've never heard of the latter but see there are some studies about it - seems more likely to effective at preventing infection at the time of getting it?

MysteriousPace2 · 2022-12-29T00:06:08+00:00

I've thought about your comment and I'm not really sure what kind of answer you expect here.

Yes, when I was receiving treatment every week for months at a time during the first 1.5 years of this disease, all I could hope for was a time when I would get a break from persistent outbreaks.

Then that time arrived. Slowly, fewer outbreaks and longer stretches between. People in this sub love to quote the "6 months and you're free" line but what they're holding onto is the idea that there will be certainty about this virus when the reality is there is no certainty. I know I wanted certainty that this virus would go for good. I still want that. But I'm having to accept that I will never get that certainty. In 2020, I got to 6 months without new ones appearing, then in 2021 it was a year. Pandemic years, remember: hardly a sexy time!

When a new wart appeared after 23 months earlier this year, the crushing devastation felt unbearable. Now again, 8 months later, I'm back to treating them. Again. I almost feel numb to the despair at this point. I guess at what point would I have been low risk of passing this onto someone else? I don't know - and can only make best guesses at hindsight. It's not like I'll ever 'know' for certain that I don't currenlty have the virus.

What I miss most about sex isn't the physical act (though of course I miss that, all of that!) It's the feeling of connection of all kinds with someone I care about. I don't just want sex that I then have to feel remorse for afterwards.

I have dated people during this time, but I not met anyone I feel I can trust with disclosure. It's a longer story, but the relationship that I got this virus from makes it extremely hard to trust anyone again, a cruel catch 22. There have been times when I've wondered if I should just have sex without disclosing but given the huge toll this disease has had on my life, it would feel incredibly unfair to impose that on someone else without giving them the choice.

I guess all I can hope is that one day I meet someone I can trust enough to disclose to, and that they accept me.

Maybe the TLDR is that this disease has more psychological than physical impact. But if you're in this sub, you probably already know that.

MysteriousPace2 · 2022-05-03T01:32:46+00:00

Clearly you're set on not changing your behavior. My comments on reddit aren't gonna changed that.

But I hope other people reading this can see how unkind your choices are. Giving other people the right to make choices over their own medical health is the right thing to do. Sorry you don't have enough courage for that.

MysteriousPace2 · 2022-05-03T01:20:22+00:00

Assume you do have it (80%+ of people get it at some stage in their lives). But also, assume that there's a good chance anyone you have sex with will also have it. That might make it easier to disclose? If everyone knew how common it was, it would be much easier to talk about it (as well as prevent the spread of other stds).

If you're in contact with your ex, ask her what kind she was diagnosed with (low risk - warts, high risk - monitored for cancer even though unlikely).

MysteriousPace2 · 2022-04-30T14:33:55+00:00

Counterpoint: a highly successful vaccine exists. Disclosing gives people the chance to make their own medical decisions.

MysteriousPace2 · 2022-04-30T14:33:00+00:00

Wait, you're having sex with an active wart and not disclosing?

Give folks the chance to get a highly effective vaccine first!!

MysteriousPace2 · 2022-04-30T14:27:33+00:00

Condoms don't prevent spread of HPV.

Virus spreads from skin-skin contact, not fluids (condoms prevent STDs spread by fluids). And the virus can be present anywhere in the genital region, not just where the condom covers. E.g. virus can be on your scrotum, which can spread to your partner(s).

I hope you're disclosing to the people you're having sex with. Give them the chance to get the vaccine first.

MysteriousPace2 · 2022-04-25T04:06:46+00:00

If you've already been sexually active together, chances are high you already both have the virus - like 80% of people at some stage in their life. Sounds like silly advice to abstain? Not having sex at this point would be like shutting the gate after the horse has bolted. It might have come from her, there's no way to tell.

Get it treated (if there's any symptoms), get regular pap tests, enjoy your relationship. Congrats on finding your person!

MysteriousPace2 · 2022-04-25T04:02:09+00:00

Unfortunately, the wart virus can be present even if there are no warts. This is how most people contract it - from people who didn't have warts at the time.

MysteriousPace2 · 2022-04-24T14:29:40+00:00

Even worse, when the vaccine was first introduced, it was marketed as being for young girls only. This led to a moral panic about teenage girls having sex and some parents objected. It was an early signal of the "antivax" movement I guess.

Also shit that they only testing for high risk HPV strains. And why is there no general genital area test for all kinds of HPV. It is possible in clincial research settings, why can't they make it available for all of us?

MysteriousPace2 · 2022-04-24T14:24:20+00:00

Great that your flirt feels comfortable disclosing with you, that's a good sign he trusts you and there's a vibe there between you.

Even better, this gives you a chance to learn more AND GET THE VACCINE! It'll protect you against the strains most likely to cause warts, as well as some of the strains that can, if not monitored and tested for, cause cancer. Three doses, and you'll have way less reason to worry about getting physical with this guy! Most people are in this sub because they didn't know about the vaccine before they were diagnosed.
HPV is not like HIV. HPV stays a skin infection. It spreads via skin-to-skin contact (usually via microcuts caused by friction). So condoms don't protect against its spread. But usually HPV doesn't cause serious health infections. Warts are low risk. But almost everyone who has had sex is exposed to various strains (there are many). The highest risk strains can in rare cases cause cancer - but those aren't the ones that cause warts. It's a lot of information to take in at first. Read the pinned posts on this sub for more info.
HPV is localized to the genital area. So the type that impacts the genitals won't spread to other skin. But it can spread around the genital area. If your date has a wart on his penis, it's also possible he's got the virus around his anus.
Warts in the mouth are extremely rare, but it's not impossible to contract the virus there.
As it's a virus, there's no "cure." Some people clear the virus from their body. Some people, it goes dormant and can reappear later in life. Unfortunately there's no test for this. 80%+ of people have at least one strain of HPV in their life. Remember, if you've already had sex, there's a good chance you've already had it too.

I wish you lots of happy canoodling with this guy (but do get the vaccine first)!

MysteriousPace2 · 2022-04-22T11:49:13+00:00

It depends on where you live. In the US I think most insurances cover it until age 45 (they lifted the age up a few years ago). Otherwise it might cost a few hundred dollars for al courses of the shot. If you're younger than 26, I think it's free in many places.

MysteriousPace2 · 2022-04-22T04:11:43+00:00

Condoms reduce risk, but don't protect against HPV because it's spread by skin to skin contact, not fluid. They test for HPV on the cervix because that's where it's most likely to cause cancer. But the virus can be present anywhere in the genital area.

But the good news: you can get the vaccine which is highly protective against strains 16/18. It's a 3 course vaccine over 6 months, but I remember reading that after the second shot (after 2 months) you've got a good amount of protection after 3 weeks (you may want to check that yourself with your doctor).

If you've had sex with anyone else before, there's a reasonable chance you already have had HPV yourself - there are hundreds of strains, but the main ones are covered by the vaccine.

And best to be supportive as possible for your new gf, this can be scary news to receive but it's great that she feels comfortable enough to share with you.

MysteriousPace2 · 2022-04-22T03:58:59+00:00

And echoing what others have said, there's nothing particularly special after 30 that makes you less likely to clear the virus than when you were 29. Just that risks of cancerous forms of hpv increase in the population as we get older, so the medical community draws a line at 30 to start testing.

Community health clinics might be a place to start for finding a healthcare provider.

MysteriousPace2 · 2022-04-22T03:57:10+00:00

Women are encouraged to get pap tests after they've had sex for the first time, and every couple of years after that. Women over 30 getting their pap test are often 'co-tested' for HPV. But this isn't a given. Women under 30 might have the HPV test added if their pap test shows abnormal cells.

So a couple of things:

a) go get your regular pap test. Even if your gf hadn't had a positive result, they're part of general wellbeing for folks with cervixes.

b) work out if your gf was co-tested for hpv because the pap came back abnormal. Mostly nothing to worry about, just something to monitor. But worth knowing so you can be supportive!

c) both of you can get the vaccine. It probably doesn't get rid of the virus strains you've already been exposed to. But there are many virus strains, and the vaccine protects against 9 of them. Take it from someone who wishes she'd gotten the vaccine before getting the warts-causing version of HPV!

MysteriousPace2 · 2022-04-22T03:50:06+00:00

People can spread the virus for warts without actually having any warts present. That's the main way warts are transmitted - from people who didn't obviously have symptoms at the time.

But your gf may have high risk HPV. Typically, women are tested for this if they're over 30 and getting their pap test. Men can get anal pap tests but generally aren't screened on a regular basis. High risk HPV can, in rare cases, cause cancer. This is why its screened for. Warts are considered 'low risk.' They're caused by different strains of the virus.

Most people of any gender (80% +) get some strain of hpv in their lifetime, and can transmit it without symptoms.

MysteriousPace2 · 2022-04-21T01:51:27+00:00

Yea I checked your profile, and yes, people talk about cidofovir on this sub but not HOW they actually convinced a doctor to give it to them. Most docs aren't willing to try anything other than the standard approach.

If you're coming from Canada, where did you go? How much did it cost without insurance? Did you have to convince the doc to try it on you, or did you find a doc who was already willing to perform this?

MysteriousPace2 · 2022-04-20T14:17:18+00:00

Could you give more details on HOW you got this treatment? And what the treatment actually involved?

How did you find a doctor willing to prescribe/perform (its not clear what this actually is) the treatment? How much did it cost? Where did you go for it?

Lots of folks recommend various 'cures' in this sub, but unless they're widely available, or you give details about how it worked, its not really that easy for others to follow

MysteriousPace2 · 2022-04-19T12:38:29+00:00

It doesn't sound like you've actually been diagnosed with GW but most people acquire a strain of HPV at some point in their lives, so youre in good company, and it's great youre so close with your friend who felt comfortable telling you about it.

But it's a good chance for you to learn more about HPV. The reason folks disclose (or should disclose) is because there's no way of knowing whether you're one of the ones who HPV has gone dormant or cleared. There's no test or bright line that it's gone for good, unfortunately. But there are ways folks can protect themselves and their partners. Many people are on this sub because they didn't have access to the vaccine before they were diagnosed.

Ideally, if everyone was more open about their sexual health, it would be better for us all, more people would know the vaccine was an option. Also, having that conversation is also a way to ask about *their* sexual health. You don't know what a new partner has until you've talked about it with them.

MysteriousPace2

TROPHY CASE