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Long story and very confused

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I have an unfortunate situation that has not become easier to deal with over the years. This all happened long ago before all the info and everything was out there about HPV or HSV. I still don't understand and am extremely confused. Years ago after a cheating, pathologically lying boyfriend ended up with me in the doctor's office after months and months of discomfort, I was given a diagnosis of hpv, low risk. I had to literally beg a doctor to do a biopsy because no less than three insisted nothing was wrong. But, I turned out to have warts. Great. Then while I was in the office of a different doctor to have them removed, I explain I have itching. She tells me that never happens, and tells me about a test that costs 100 dollars, not covered by insurance, that is from the University of Washington to tell me if I have HSV. Says I am better off knowing. Ok... so I now years later understand she was giving me a Western Blot test which I understand is never given as a first run test. It's only supposed to confirm. So it comes back positive for both types. Great. So now I have not one but two std's for the rest of my life, hpv and hsv2. Can this even be real... my dating life over and I was only in my 20's. Well I ask her and she keeps telling me "It means you were exposed". She keeps going on about this "exposed, exposed"... and I'm like, "Do I HAVE it???" and she keeps going on about being exposed. Jesus. So I ask "Do I need to tell people if I have it"... she says, "That's up to you". Ok. thanks. You're lots of help lady. She tells me that you can either type of sore in either place and you can't know what type is where. Ok so since I have never had a sore in my nether regions ever, I decide I will start mentioning it if I do. I go on to tell partners about HPV, which most respond with "What's that?"... then I'd have to give a very awkward std education talk that even I don't really understand quite clearly. This was all many years ago before most people knew what HPV is. And I had a number of rejections based on that.


So there I was in the weird nether region of being asymptomatic for hsv2, being told I was "exposed" and diagnosed with a test that years ago, nobody had ever heard of, and nobody ever took. It was ridiculous. My head was spinning. I couldn't really tell partners to go shell out 100 bucks for a test that most doctors would have refused to give them and that in hindsight I don't think she should have given me. This was long before all the testing that is more common now. And I had always had cold sores but did not know they were considered an std until very recently. I just avoided all kissing etc until they were gone.


I was also under the impression that asymptomatic shedding was a thing that happened between outbreaks to people who had them, and I had not had one, ever, "down south". But years later I asked my Dr about this and they said something like I would shed 3 percent of the time or something. So I tell my (then) most recent partner about this and he screams at me I am a liar, he hates me, and completely freaks out on me.


So, years down the line, I hear that hpv "clears" the system. Hallelujah is this true? I get another hsv test and it is the newer more accurate Elisa test. It comes back negative. I almost die of happiness. The whole Western Blot "exposed" debacle must have meant I was exposed but didn't catch it, just like you can be exposed to a cold but mot catch it. I tell my Dr that the Western Blot test came back positive many years ago and the he says "Oh well you r body just stopped making antibodies for it". Record screeeetchh... . What??? What does that even mean? I have never, ever heard of that before in my entire life. I research all over the internet and find nothing. So if that's the case, how many other people quit making antibodies, got tested, came back negative and thin k they don't have anything?


I am as usual completely lost as to what to tell partners. So I start saying well, one test said I had this, another said I didn't.



And now I wonder if I should just try and save up the now TWO hundred dollars it costs for Western Blot and just do it again?


And my current BF recently tells me I shed hsv1in my mouth even if I don't have a cold sore. So now I feel diseased all over again. So I have gone through much of my life thinking I have 2 std's which I could not mentally handle, being extremely confused over the whole "exposed" thing- and now I find I have three std's in fact. So now I realize I probably gave hsv 1 to people engaging in oral which for years I thought was "safe" if I didn't have any cold sores.


I do know that currently I have met not a single person out there with hsv1, and hsv2 and warts. I always used protection, always. My friends used to even tease me about how "safe" I was. Never had unprotected in my life, ever.


I am afraid now, with all the updated knowledge we have- to even kiss my Bf. We have zero sex life.


But then when I think about it I wonder about the panic over these things at times because you hear that all of these things can be caught orally, and genitally, that hpv can cause warts and cancer orally and genitally. But I never had anything besides cold sores in my life which I understand are pretty common and also still never had any sores "down south". Just warts, over a decade ago. And as for those, one year it's "Your body clears them, you're free" and the next it's "They lie dormant forever".


So I don't know what to think or say. But to say I have been frustrated with my sexual health for a lifetime would be the least of it. I am currently in a less than stellar relationship because I feel nobody wants to deal with this.

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@pecan I don't have all the answers for you, but I can tell you that HPV is VERY common. There's now a vaccine for a handful of the more problematic strains and that vaccine is recommended for children at an age when they are not yet sexually active. The reason for this is that most people contract at least one strain of HPV within a couple years of becoming sexually active. 70% of sexually active women contract at least one form of HPV by the age of 22.


HSV1 and HSV2 are also very, very common. 40% of people with HSV2 also have HSV1. HSV1 is often acquired in childhood, often between the ages of 6 months old and 3 years old. Many people have HSV1 before they become sexually active. Once people become sexually active, rates of HSV2 increase and HSV2 provides immunity from HSV1, so the rate of HSV1 is lower among people with HSV2 than in the general population, but still pretty high at 40%. In the general population, more than half of people have HSV1 by the time they reach adulthood and the percentage of those infected continues to climb in adulthood until almost everyone has at least one form of HSV.


So the likelihood you've never met anyone else with HSV1, HSV2 and HPV is low. But almost none of those people will know they have all those things because they are usually asymptomatic or have very mild symptoms as you experienced (you mentioned itching that may have been related to HSV2) and they are usually not tested for. This is still the case today, not just 10 years ago. There is no HPV test for men, unfortunately. Women are tested for cervical cell changes when they have pap smears, but that's not the same as testing generally for HPV which has many (over 100) strains and may or may not cause cervical cell changes that trigger a result on a pap smear and may also infect someone orally (like in the crypts of the tonsils) which would not be identified by a pap smear.


I don't know a lot about HPV, but in terms of symptoms I think it's similar to HSV in that most of the time people have no idea they have it, but for some reason that is yet to be determined, a minority of people develop symptoms. It is different from HSV in that it does clear the system within a couple years most of the time, but not always, again for a reason that has yet to be determined. It is also different from HSV in that some of the strains (not the ones that cause warts, I don't think) *can* cause cancer in the minority of cases in which it does not clear the system. For women, this is most often cervical cancer, hence the pap smears. For men, this is typically throat cancer and it is often detected at a very late stage because a non-invasive test is not available, so that really sucks. By the time someone has performed oral sex on 6 partners, they have increased their risk of head and neck cancer by 8 times. Hopefully the vaccine will help with the younger generation (it is recommended for girls and boys) or perhaps there will be advances in testing someday.


As of today, the Western Blot is more accurate than the Elisa IgG which misses about 5% of HSV2 cases, but I don't know if it has changed at all in 10 years. If you are able, that would be a great question to ask Terri Warren who is an expert in that area. She has a web page (google Westover Heights Terri Warren) with a Q&A section. But there is a small fee to ask a question.


I'm sorry you've received such shitty information from your doctor about "exposure." I've now spoken with 2 doctors and a nurse practitioner and each misinformed me in one way or another, and I've seen this theme repeated by many posters, so I think it is not uncommon. The nurse practitioner told me much the same as you were told. I had merely been exposed, I didn't actually have it, I didn't need to inform partners, etc. She was very hostile when I questioned some of this advice and doubled down and shouted all the same advice at me. So I talked to the doctor who had a somewhat better understanding, but only somewhat. He did not seem to be aware of asymptomatic shedding and insisted a partner would need to come into contact with a blister (which I've never had) to be infected. Still, he cooperated with my desire to go on antivirals to reduce transmission (unlike the nurse practitioner) so that was good.


Your boyfriend is correct that HSV1 can be transmitted from the mouth during kissing or oral sex, even when a cold sore is not present, but the risk is very low and it is a risk uninfected people most often take without knowing it. If he doesn't yet have HSV (he would be in the minority if he doesn't), he will have an increasingly hard time finding a partner who is not infected with either type of HSV.

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My bf has nothing, he was tested for everything about 9 months into us dating. So now I don't want to even touch him. I am still unconvinced that mere itching, exactly where the warts were, and that disappeared after warts were treated, was an indication of hsv 2 and I'll never believe it was right for that Dr to give me a test that NOBODY else was getting.


I know about how common hpv is but then I read 1 percent, only one percent of the population has warts. So that seems very rare to me. And of course I'd be the one to get it. And on top of it I read how hsv 1 and 2 together are rare. So of course, who gets all three diseases? Of course. This whole thing basically destroyed me mentally over the years. Now I just envision a diseased cesspool every time I go near my bf. We haven't even kissed for months and months. I am petrified of holding a friend's baby. I don't want to do it. If they knew, they probably wouldn't even allow me in their house. I wash my hands until they are chapped and raw.


I have never, ever not once had an outbreak "downstairs"... possibly, not even sure if it was a zit or not- one time for 2 maybe 3 days about 12 years after all of the initial tests. And as for hpv it has been over ten years and no problems. But knowing that even if I have zero symptoms and can still give it to my bf, I just cannot ever feel comfortable with myself. Even though I don't even know I have it most of the time. I mean zero symptoms. Cold sores, that's it.


And the Elisa test I had later also had a really high accuracy rate. So even though Western Blot is considered the most accurate, I can't help but think that mistakes can be made. The Elisa has really high accuracy rates too. I know Western is higher but I find it hard to believe I would get a false negative in a 95 % accurate test. Or that I quit making antibodies. Because if that were true, nobody would ever test, because there would be no telling if someone had it, or quit making antibodies.



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I have to admit, after reading all this my head is spinning too...Let's take a deep breathe and start over.

Western blot confirmation stated you have hsv2...years later you get a negative blood test? Western blot is most accurate, you can always ask for another western blot...you local family planning center can order it or your primary care physician.

As for having 3 life long stds....I am also in the same boat you are...however after my surgery for hpv (high risk type), my paps have been negative.

I for certain will never know how long I've been infected with hsv1 and hsv2....

I think decades, but was confirmed a little over a year ago.

There have been plenty of times I have looked around a room and thought to myself "if you knew, would you let me use your toilet?, or would you still touch me"....Sure, it makes me sad, but somehow I've managed to put it behind me and move forward. I have not disclosed to a partner, I'm in a marriage...he doesn't know any of my status to this day. I still don't feel strong enough to tackle the stigma.

Not sure if I helped, but you are not alone.

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  • 3 months later...

It is near impossible to get another Western Blot. I am researching it until my head aches. I asked my doctor and he wasn't really interested in doing it. The test is prohibitively expensive and very difficult to obtain and the of course one must also find a doctor who:


Has actually heard of the test


Is willing to order and give the test.


Thanks for the feedback guys... and gals... and everyone

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