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free_spirit
(((Bites)))

I don't really have any advice, but you know it goes without saying that you are not alone.

You can always use this board to vent and rant as much as you like/need. Even though you may not know any of us in RL we will all listen to you and give you virtual hugs!

I hope you feel better soon!

I know how it feels, to feel like you have no one close in town to confide in. It sucks that you have to go through this alone. Do you have any siblings?






(I was debating whether to clarify this or not...and i decided that i should, even though it was for the only reason that i didnt want people to think i have it...as crazy as it sounds. (because i understand how people who do everything right gets a disease or infection) i do not have herpes, i guess my post read like i do) I was just popping in trying to show support like i see other posters do. and some of the posters thought my post meant i have the infection also. (i received pm's )
kelkello
Bites, I have complete empathy for you. I was diagnosed with herpes back in August, and I thought my life as I knew it was over. I am slowly coming to grips with it, but I still get extremely angry about it. Like you, I always used condoms. What they don't tell you about herpes is that it is passed through skin to skin contact, so if his outbreak was anywhere away from the condom coverage area, it could pass to you. Also, the virus sheds even when there is no outbreak, and it can still spread even with no visible symptoms. To top it off, oral herpes can be spread to the genitals during oral sex. Needless to say, I knew none of this before I got herpes. My boyfriend didn't know he had it. Some guys have only flulike symptoms and never get an outbreak.

What sort of test did your gp give you? Did she swab the area and do a blood test? I would recommend getting retested somewhere else because it seems mighty strange that you are having outbreaks but came back negative. If you are positive, I (and most doctors) would recommend daily suppressive therapy with Valtrex or its equal. It reduces your outbreaks (usually) and greatly reduces the shedding so you are less likely to give it to others.

Your anger is warranted. I was talking to a friend today about it and how I know sooooo many people who take so many risks sexually....tons of partners, lack of protection, etc. They are clean. I take precautions, limit my partners, etc. and ended up with a lifetime disease that is stigmatizing and will make all future relationships and childbearing more difficult. It's not fair, but nothing is.

You can vent here anytime. The folks here heard my rants and raves when I was diagnosed and were a great support to me. I'm finally coming to terms with this, but every outbreak sends me reeling again. It's going to take a long time. Just know that you have friends here.
bites
QUOTE(kelkello @ Jan 4 2007, 03:12 AM) *

What sort of test did your gp give you? Did she swab the area and do a blood test?


The clap clinic doc did a swab and I had a blood test which they also use to test for the other major STDs.

QUOTE
I would recommend getting retested somewhere else because it seems mighty strange that you are having outbreaks but came back negative.


They did say I can come back for retesting at any point when I have sores, but I have not to be taking suppressive therapy. The other problem with the swab at the time, which the doc said was that the spot were not expressing fluids by the time I got to them.

QUOTE
If you are positive, I (and most doctors) would recommend daily suppressive therapy with Valtrex or its equal. It reduces your outbreaks (usually) and greatly reduces the shedding so you are less likely to give it to others.


I wonder if this is a US/UK difference. Appears you guys are often ahead of the game in these things. I'm in the UK, using the National Health system and frankly, they suck donkey balls at some things. For example, they'll always prescribe the cheapest drug first because they have to save money. I asked my GP last week about changing meds but he insisted aciclovir is the only one. Is Valtrex simply a brand name for Aciclovir or are there different types of the same drug, do you know? It's hard to get much info out of some GPs here - often because they don't actually know and cannot be bothered to look it up. I really need to go back when I'm in a better mental state, ask to see the doctor who I know is a good guy and who used to work with AIDS patients, and actually try to dscuss treatment options. The last couple of times, it's been your standard 2 minute, throw a prescription at you-style typical NHS appointment. Fine if you have something basic wrong, not so good if you're unsure and need to talk.

QUOTE
Your anger is warranted. I was talking to a friend today about it and how I know sooooo many people who take so many risks sexually....tons of partners, lack of protection, etc. They are clean. I take precautions, limit my partners, etc. and ended up with a lifetime disease that is stigmatizing and will make all future relationships and childbearing more difficult. It's not fair, but nothing is.


Tell me about it. I'm in my late thirties and I've had the grand sum of ten sexual partners. I've had years of my life with no sexual contact at all. I've always had safe sex. Yet I end up with crotchrot while women I know who go to casual sex parties and shag five men in an afternoon have nothing (as far as they know, obviously). It's just bad luck, I know, but the sociatel assumption is still that STDs = big dumb immoral whore. I just ran across someone saying that a few moments ago. Literally, 'Only fuck smart, educated women - they're STD-free. You only have to worry about putting it in dumb trashy bitches'. Well, thanks. I have two degrees, am generally held to be 'posh' in my own country and I care more about my intellect than my appearance. Guess I can throw all that away now and go fuck men in alleys for cash while my brains dribble out my ears now I have herpes, eh? Seriously, I know it's a pile of trash but still, it's relfective of how people still think and it pisses me off mightily.

QUOTE
You can vent here anytime. The folks here heard my rants and raves when I was diagnosed and were a great support to me. I'm finally coming to terms with this, but every outbreak sends me reeling again. It's going to take a long time. Just know that you have friends here.


Thanks. It has helped just type stuff here, to be honest. I'm sure I'll be back to vent and rant and ask annoying questions again!


QUOTE(free_spirit @ Jan 3 2007, 11:34 PM) *

I hope you feel better soon!


Thanks. I do appreciate it.

QUOTE
I know how it feels, to feel like you have no one close in town to confide in. It sucks that you have to go through this alone. Do you have any siblings?


I have a sister but it's not a great relationship. We don't see each other that often, don't really talk about anything important when we do (she's very moody and uncommunicative), and while I don't think she'd actually be a jerk about it, I don't feel like it's something I'll ever have an opportunity to bring up with her either.

It's stupid, any other disease that's not an STD I could tell the world about. Why is a cold sore on the pussy such a shameful thing?



QUOTE(free_spirit @ Jan 3 2007, 11:34 PM) *

I hope you feel better soon!


Thanks. I do appreciate it.

QUOTE
I know how it feels, to feel like you have no one close in town to confide in. It sucks that you have to go through this alone. Do you have any siblings?


I have a sister but it's not a great relationship. We don't see each other that often, don't really talk about anything important when we do (she's very moody and uncommunicative), and while I don't think she'd actually be a jerk about it, I don't feel like it's something I'll ever have an opportunity to bring up with her either.

It's stupid, any other disease that's not an STD I could tell the world about. Why is a cold sore on the pussy such a shameful thing?

kelkello
Bites, Valtrex is valcyclovir, which is different than what you take, I believe. Aciclovir is usually taken more than once a day and is often prescribed for short term use. Valtrex is more powerful and is taken once a day. They give you a huge dose during your first outbreak and then put you on a lower dose for management. If you break out again, they up it for three days. They may not use it as much in the UK because it is very expensive. If I didn't have insurance, my prescription would cost about $400 (or close to 200 pounds) per month.

As for what you said about overhearing the comment about screwing only intelligent women because they are disease free, well, that's a fucking crock. 1 in 4 people have herpes and 75% of them don't even know it. And since for some the outbreaks are only a red coloration or only flu-like symptoms, they could be spreading it all over the damned place. Like I said, my bf had no idea he had this. He had no symptoms whatsoever. He's only slept with 3 women in his life (he was married for 16 years and then had two partners before me). I'm 32 and have been with 11. And like you, I went years at a time with no sexual contact. 25% or more of the population have this disease...and they can't try to make me believe that it's only the slaggy whore percentage. I'm not one, you're not one, and millions of others are just like us: unlucky. And we have a conscience that won't let us not feel bad about it and that won't let us be irresponsible about spreading it.

I go through periods where I feel like I always did: normal. Then I get an outbreak, and all the anger and anxiety comes back. Or I think about what would happen if my bf and I broke up and I had to go out into the dating world again. Egad.
roseviolet
January is Cervical Cancer Awareness Month, so NPR recently had a story about HPV in women and its connections to cancer. Here's a link to the story.
"A Common Virus"
To listen to the audio file of the story, just click on the link under the articles title. The audio story is about 12 minutes long, but it's good stuff. Definitely worth a listen. The comment section on this page has some excellent stuff, too.

pixiedust
I wanna jump up and down...I have been remiss and haven't had a pap in about 2 years. I have been wart free for almost a year, and because I am pregnant, I had a pap 2 weeks ago..I just got a card in the mail today that says I am totally clear! I was worried because I have had "abnormalities" prior to this.
_octinoxate
pixie, that's awesome! What a relief! Congratulations!
p_176
<sigh> having another problem with the hpv....there's obviously a problem on the outside, but not sure until dr appt next week how extensive it is on the inside.
i'm trying to cling to the fact that, every time i go for a followup, things have either been progressively better or have been completely cleared up. the last follow up was clear.
i know it's because i've been working 2 jobs (60 hours per week), drinking more than i should, and not getting enough sleep. am trying to just make habit changes instead of beating myself up, but since it's entirely my fault i have this issue in the first place, i'm pretty annoyed with myself....
in the meantime will try those homeopathic treatments to try to get things to calm down before going to the dr....
<sigh>
fuego_lento
p_176, I wonder if getting the HPV vaccine might help your body fight the virus better. I know the vaccine is too new for anyone to have tested it in that manner, but it might be worth asking your girldoc. Worst case scenario would be it protects you from getting any other strains of HPV, but best case might be it kicks your immune system into high gear to fight the one you have. I also don't remember -- were you using aloe or Aldara, or were your recurrences internal/cervical?

I haven't been posting much lately, but I do read this thread every time someone posts anything new. I want to hug you all for going through all this bullshit. It's helped me so much to have even this online contact with others who have cooties (most of my friends know, and that's great, but none of my real-life friends has herpes -- and even the ones that've had HPV had cervical dysplasia rather than warts (lucky me, getting warts) -- so they can't really relate), to know I'm not alone and to be able to talk about it all.

After almost a full year on suppressive Famvir I think it's finally been almost two months since my last herpes outbreak. This is so rare for me to not see it monthly. I'm not going to assume it's under control because I've gone more than a month without an outbreak before, but then it starts back up again every month soon afterward. Seriously, it's been 11 years since I was diagnosed. You'd think this damn virus would've burned itself out by now and wouldn't have the energy to keep flaring up like this. But still... It feels good to be able to relax a bit and not always be waiting for/in the middle of an outbreak. Gives me hope that maybe one day I'll finally fit into that "normal" camp that only gets outbreaks 3-4 times a year.
p_176
hi fuego - thanks for your kind words, it helps. my dr who does the surgeries said that the vaccine would help - that even though there were no conclusive data, since it's so new, in the tests that were done, it showed that people who had outbreaks cleared them quicker after havingb the vaccine.
my gyn won't give me the vaccine, 'cause he thinks since i already have the virus, the vaccine wont' matter. plus, the vaccine is being given (apparently) more to pediatricians than to gyns?
i'm more frustrated with myself - like i said, i'm working 2 jobs, which is really stressful physicaly, and i guess over the last few months, my body is now revolting, and i have ugly little warts yet again. i can only hope that it's only the external ones i see and that it's not affecting my cervix, or has gone further in to the anal canal.
i've been having several laser sugeries over the last two years. all my most recent followups were clean, which is why i'm so annoyed with this right now. had used aldara after the surgery as a co-treatment, which definitely helped prevent the warts from coming back. so i'll find out friday what the deal is.
i think i need to quit my parttime job, totally quit drinking alcohol and caffeine. the vitamins i take really help my body feel good and energetic, i'm just contradicting all that with the intake of alcohol and caffiene (since it affects sleep patterns).
<sigh>
p_176
well, it looks like my insurance will cover it still since i'm 26, and i called my girldr, and they can order it as soon as my insurance pays for it. so it looks like i shall get the vaccine.
if that does not work to keep this in check, i'm not sure that anything else will
kelkello
Hey Fuego, that's good news that it might be calming down for you. I hesitate to say the same (because I'm stupid-stitious like that) but I haven't had an outbreak in close to two months. I hope it stays that way. I do some creative visualizing (new age-y and not me at all, but why not?) whenever I start feeling like I might be due for an outbreak. It could be helping, it could be doing nothing. My boyfriend (who gave me this) has only had one outbreak EVER. He is not affected by stress at all. I'm so fucking jealous!
p_176
have been using vinegar and tea tree oil on the area, which is supposed to dry up the area so it does not spread, and tea tree oil is supposed to be antiviral. of course it would be several weeks before really seeing results, but i guess it makes me feel like i am doing something....
has anyone had the vaccine yet?
Moonpieluv
So I tested positive last week for HSV and the nurse told me that apparently I've had it a long time considering I have the antibodies... problem is, I believe I may be asymptomatic, as I have had no noticeable symptoms... meaning no primary outbreak. Also, it is possible since I just got bloodwork done for this, that I may have HSV 1 and not be positive for 2?

I mean, when I intially asked for the full run bloodwork, the gyn/nurse seemed as if any test with the exception of HIV and pap wasn't necessary because I wasn't experiencing any classic symptoms. I've read that the dr.'s don't want to alarm you if you are asymptomatic, but I can still spread it, so that's fucked. I just wanted to see where I stand after my grieving crazy period post 6 year relationship breakup. Upon receiving the results, she was all "you may just be a carrier and you tested .11 out of .10 for +, so it shows you've had a long time" Further she said, no need to go on any suppressives since I have NOT had a primary or even a secondary or whatever that I've noticed and to just wear condoms. It's hard to find a private place to ask these questions over the phone, as well. Everyone I spoken with regarding this says I would certainly know if I were having one. I've noticed butt pimples/boils, but I've been getting those mostly during the summer or from workouts seemingly due to moisture for awhile. So I'm a wee confused as to be expected with this news.... we all want to find a way out. I wouldn't be surprised if I did contract HSV2 seeing as it is one of the most prevalent viruses aside from HPV. And even with condoms, dental dams, whatever... it seems we can't protect ourselves or others.

Sorry for such a convoluted post, but I want to explain that I have HPV, as well with my past three paps coming up fine. I had the LEEP surgery in 2005 and at the time... I was the most stressed out that I have ever been.... high blood pressure, tension headaches, digestive problems, depression, excessive drinking and smoking. dang. If I had it for a "long time" why wouldn't it have popped up yet? I know we don't know when we got it necessarily, but I guess I just need some clear-cut affirmation... that is, hopefully never experiencing a outbreak.

Thanks... the Q's are in there, if anyone would be so kind as to provide their thoughts, that would be great. I'm doing my research and calling the doc tomorrow regardless.
kelkello
Hey Moonpie,

Okay, a couple of answers and bits of info on HSV:

1. It is spread through skin to skin contact, so condoms only protect the areas covered. My breakouts occur outside that area (as do many people's), so condoms won't help me to not spread it.

2. You will test positive with a bloodtest for HSV if you have 1 or 2. I think some bloodtests can figure out which type. A culture test on a sore can tell, but since you are asymptomatic, that won't help. Have you ever had a cold sore? That's type 1 and that might be all you have. However, it can spread from mouth to genitals, too. You can have HSV 1 down below and HSV 2 up above, if you get my drift.

3. Suppressive therapy would be recommended to help you not spread the virus, if indeed you have the genital variety. I would ask your doctor to give you a blood test that can help you figure out which type you have.

4. You would most likely know if you have a breakout. The sores are quite painful and last several days. They rarely occur on the buttocks, but it is possible. However, some folks only get flu-like symptoms and that's it. My boyfriend was asymptomatic for a long time, and many people stay that way. However, your body sheds the virus whether you have a breakout or not. This means you can spread it even if you have no symptoms. Again, it is important to find out what type you have. You don't want to put yourself on a drug like Valtrex or Famvir if you don't need them. If it's coldsores, it's much easier to deal with in terms of spreading. I got it from my boyfriend, and he had no symptoms whatsoever, yet here I am with herpes.

5. Good luck, and if you have questions, you can ask us here or private message if you have any questions you don't want posted.
k_phila
So I had sex with this guy for the first time this weekend, and there were some unsafe condom-issues that went on. My lips were really chapped for a couple of days, and I was picking at them as I (know I shouldn't) do earlier today and now part of my upper lip is swollen and red. I attributed it at first to winter suckiness, my lips get really chapped in this weather, but there's also a bump in the nether-regions that definitely wasn't there a couple days ago. The swelling on my lip is kind of tingly and hot, and the bump near my genitals is somewhat itchy.

So I'm guessing I have herpes. I've been reading about it all night, and then I called a friend who I think is somewhat knowledgeable about the topic, and I'm getting conflicting messages-- the web says that herpes takes 2-8 days to flare up after the initial contraction, but she was under the impression that it lies dormant for several months before showing symptoms. I'm going to see a doctor asap, but it might take a while to get an appointment and I know there are nightowls on this thing-- hopefully I can get some information before too long.

Are there any good over-the-counter treatments? Any naturopathic treatments? Any diet changes I can make to calm the sores and avoid future breakouts? Damn, I am not looking forward to having the I-think-you-may-have-herpes discussion with this person. I really like him.
Moonpieluv
Thanks for reinterating that information for me. I am aware on how it is spread, suppose I just needed to vent a bit as to the frustration of it spreading so easily, ya know. Also, thanks for elaborating on the nuances of the bloodtest. I do remember having a cold sore when I was a little girl, and both my parents get them pretty bad, and even figure they also have 2. soo..... I'm on it in terms of getting a differientation between the two types.

Again... thanks, you've been a great. Let's me know I ain't alone.

QUOTE(kelkello @ Feb 13 2007, 05:54 PM) *

Hey Moonpie,

Okay, a couple of answers and bits of info on HSV:

1. It is spread through skin to skin contact, so condoms only protect the areas covered. My breakouts occur outside that area (as do many people's), so condoms won't help me to not spread it.

2. You will test positive with a bloodtest for HSV if you have 1 or 2. I think some bloodtests can figure out which type. A culture test on a sore can tell, but since you are asymptomatic, that won't help. Have you ever had a cold sore? That's type 1 and that might be all you have. However, it can spread from mouth to genitals, too. You can have HSV 1 down below and HSV 2 up above, if you get my drift.

3. Suppressive therapy would be recommended to help you not spread the virus, if indeed you have the genital variety. I would ask your doctor to give you a blood test that can help you figure out which type you have.

4. You would most likely know if you have a breakout. The sores are quite painful and last several days. They rarely occur on the buttocks, but it is possible. However, some folks only get flu-like symptoms and that's it. My boyfriend was asymptomatic for a long time, and many people stay that way. However, your body sheds the virus whether you have a breakout or not. This means you can spread it even if you have no symptoms. Again, it is important to find out what type you have. You don't want to put yourself on a drug like Valtrex or Famvir if you don't need them. If it's coldsores, it's much easier to deal with in terms of spreading. I got it from my boyfriend, and he had no symptoms whatsoever, yet here I am with herpes.

5. Good luck, and if you have questions, you can ask us here or private message if you have any questions you don't want posted.

p_176
hello!! i had my dr appt this morning, and everything is fine (apparently just have a skin tag not any warties visiting). i'm sorry for panicking:-/
still going to get the vaccine though.
thanks, ladies, for your support.
kelkello
QUOTE(k_phila @ Feb 13 2007, 11:04 PM) *

So I had sex with this guy for the first time this weekend, and there were some unsafe condom-issues that went on. My lips were really chapped for a couple of days, and I was picking at them as I (know I shouldn't) do earlier today and now part of my upper lip is swollen and red. I attributed it at first to winter suckiness, my lips get really chapped in this weather, but there's also a bump in the nether-regions that definitely wasn't there a couple days ago. The swelling on my lip is kind of tingly and hot, and the bump near my genitals is somewhat itchy.

So I'm guessing I have herpes. I've been reading about it all night, and then I called a friend who I think is somewhat knowledgeable about the topic, and I'm getting conflicting messages-- the web says that herpes takes 2-8 days to flare up after the initial contraction, but she was under the impression that it lies dormant for several months before showing symptoms. I'm going to see a doctor asap, but it might take a while to get an appointment and I know there are nightowls on this thing-- hopefully I can get some information before too long.

Are there any good over-the-counter treatments? Any naturopathic treatments? Any diet changes I can make to calm the sores and avoid future breakouts? Damn, I am not looking forward to having the I-think-you-may-have-herpes discussion with this person. I really like him.


If it's tingly, it sounds like herpes. The sore down below might feel itchy, tingly, painful, or all of the above, if it's herpes. It can lie dormant for months, but it doesn't have to. It can break out right away, depending on the person, really. Hopefully you've seen a doctor already because without a culture of the sore, you have only a bloodtest to go by, which if you've read the past few posts, they can be tricky. Let me know if you have any questions. As for diet, you can take a lysine supplement. It's supposed to help; I take it. I don't know if it really helps, but why not? I'm also on suppressive therapy for mine..valtrex. You ought to ask chachaheels about natural remedies, etc. since that is her specialty.
fuego_lento
Good to hear it went well at the doctor, p_176! (I've always wondered what skin tags are and why they need to look like warts and freak us out...)

Moonpie, yeah, it's possible you've only got HSV1 and not HSV2. The blood test should've revealed what type, but it won't tell you where you've got it. I found out about 2 years ago that I've got both types -- I just assume I have both genitally because I can't recall ever breaking out on my mouth. Genital HSV1 and oral HSV2 tend to recur infrequently or not at all after the primary outbreak because the virus doesn't really want to be in that place.

K_phila, how are you feeling today? Get tested ASAP just to see if it really is herpes. Besides, the sooner you know what's going on, the sooner you can start treating it. Time frames are always approximate with viruses, so the 2-8 days thing can be accurate but some people see nothing for months and others never have an outbreak. In my case, it showed up about a week after I made out with a guy I had a crush on -- we didn't even have sex -- so it can take very little to spread.

Re: drugs... Acyclovir is available by Rx but is cheap as a generic (it might even be on the $4 drug list at Wal*Mart and Target); your other Rx options are Valtrex and Famvir, both of which are still under patent and hence expensive. For oral sores, someone was telling me Herpecin clears hers up in 24 hours. Tea tree oil helps numb the sores and dries them out so they heal faster (hydrogen peroxide can work, too, but be careful of putting that close to your bits -- if it bleaches hair, it can burn sensitive skin). I've read Dermaplast -- a topical anesthetic -- can help a lot, too, if you're in pain, which it sounds like you're not. As far as naturopathic stuff, I second the advice to ask Chachaheels since I know nothing about any of it but she does.

As for telling your guy, I got burned by the guy who gave it to me so I'm going to sugest you tell your guy ASAP before anything else happens. Worst case scenario could be something like what happened to me, where the guy swore he'd been tested and then recanted once I tested positive, then accused me of having given it to him -- when I'd been tested not long before I met him and knew I was as negative for everything as I could be. To be fair, this was 1996 and most doctors only did a cursory visual check, so herpes easily could've gone undetected IF THE GUY HAD EVER GONE TO SEE A DOCTOR IN THE COUPLE OF YEARS BEFORE HE MET ME, but that wasn't the case. Then again, the guy who gave me herpes was one of the reigning assholes I've ever known, so take my caution and advice with a grain of salt.

I hope all goes well. Chin up.
k_phila
Ladies, thanks for the advice. I did go to the doctor, and because the sore was already pretty dried out, she didn't want to waste my money by taking a useless culture. She did think it was herpes though, so she gave me Acyclovir oral. I'm a little irritated because this stuff apparently only helps to alleviate the severity and shorten the duration of the sore, rather than help prevent spreading it around like Valtrex. But I have to take what I can get with the shit college medical plan I'm under.

I called the guy up and told him about the herpes. He actually took it very well, but said that he had gotten full bloodwork done two weeks prior and that it had come back completely clean. I pointed out that he could've picked something up during that two weeks and passed it on to me, but I also made sure to tell him that I also could've just randomly gotten it somewhere. I mean, we were at a party that night, and people were all over the place. He's getting tested again, but because he doesn't have an actual sore, and because if he did pick it up recently I don't think he's had time to develop antibodies, I doubt he'll come back with a positive test.

I'm not very worried about who gave whom what though-- I've been reading various sources, and apparently herpes and plain old coldsores are one and the same, which I wasn't aware of, and they're caused by the same things-- stress, poor diet, smoking, generally unhealthy lifestyle, stress, stress-- all of which I had been experiencing in greater-than-normal volume prior to the breakout. So I figure if I get back on track with taking care of myself (the way I normally do), I have every reason to expect that I don't have to expect a coldsore any more often than I would expect a cold. I think I can handle that.

In keeping with my resolution to take care of myself, I'm getting some rest. I have a big party to work tomorrow, a major project to plow through this weekend, and a coldsore to eradicate before a date (with a different guy) on Tuesday. Good night!
kelkello
kphila...I hope it works out for you. I was diagnosed last August and had monthly outbreaks for three months, and then it skipped a month, and now I've gone two months with no outbreaks. You might want to prepare yourself for more outbreaks regardless of other factors...I know fuego on here says she broke out monthly for years. Those other things are factors, but a virus like this is weird and can react oddly depending on the person. My bf who gave it to me had one outbreak and has never seen another. I hope that happens for you. The problem is that he spread it with no visible signs...he never had an outbreak until two months after he gave it to me. That means it spreads regardless of whether you are sympotomatic. Condoms can help, but it's spread skin to skin, so if your "spot" is outside condom range, you can still spread it. Good luck to you! Also, Abreva (over the counter cold sore medication) works well to help heal oral cold sores. Expensive, but effective.
edie52
Kphila, I think it's great that you seem so levelheaded about this- do prepare yourself for more outbreaks, like kelkello said, but don't neccessarily expect them. I was pretty much asymptomatic for years after my initial o.b. and I didn't worry or think about it too much, mostly because I was still with the guy who gave it to me and there was no reason to stress. When I re-entered the dating world I stressed a lot and thought about it constantly- not cool- and I had some outbreaks and a lot of discomfort. The thing is I rarely get sores but I really often have nerve pain and itchiness- maybe because I think it's type 1 (got it from a cold sore), though I haven't been type-tested. Sometimes I feel like my brain is living down there, waiting for the first signs of pain or discomfort. If you do that with any area of your body it's bound to feel weird. I take lysine and watch my diet, but I can't afford an Rx. My vices are alcohol and staying up late, and I also stress easily. I also find it gets worse in the winter.
kelkello
Edie, I know what you mean about your brain living down there. Any itch, any twinge, and I notice it and wonder if I'm having an OB. I'm sure it itched and twinged before I was diagnosed, just never had a real reason to think about it. When I start thinking about outbreaks, I breath in and imagine clean, sparkly air and when I breath out I imagine dark, dirty air. Bring in the good, take out the bad. It helps calm me down when I get stressed. I don't know if it helps at all with the outbreaks, but it makes me feel better, and that has to be good.
fuego_lento
Damn.it. I spoke too soon. Woke up this morning to an outbreak. *sigh* Oh well. I'm beating it to death with huge doses of drugs and I hope it gets the hint and goes away soon.
kelkello
(((fuego))) that sucks! *sends healing wishes*
fuego_lento
Eh, it's annoying, but not a big deal. I just got sort of hopeful that I finally had things under control and it seems that's not the case. I'd be a lot more upset if I were in a relationship, since monthly outbreaks make me feel like I'm always a/ in the middle of an outbreak, b/ waiting for it to go away, or c/ waiting for the next one to show up, all of which means there's never a time I feel relaxed and comfortable and confident that sex is not risky for my partner. (The relationship situation may change soon, though, and I feel like part of me is resisting -- not because I'm not into him but for the reason I just mentioned. That sucks.)
undine
Well, here I am again, opening myself up like an idiot. But I'll do it. I hate to be the spectre of doom but I am an HPV unsuccess story. I don't have the warts I have cancer cells. I don't know where else to post this. I need a hysterectomy. I need to connect with women who are going through this or have gone through this procedure. I have tried to privately contact a few other HPV-ers here a year or so ago to talk about it and was rejected, so don't respond if you are not up to talking with me. I have nowhere else to go. I have no support system in my life for this.
Moonpieluv
You're no idiot. You need us/someone. and that's perfectly understandable in your situation.... in fact, I just read an article in Jane mag. about advanced cervical cancer.... I bought for that very reason today. It seems the "success" stories are the ones that catch it early and either stave it off or get the LEEP, for ex., but that doesn't mean we can just wash our hands of it either.

I'm sorry to hear that you got "rejected" as you say... that's so insensitive. My friend was just diagnosed with cervical cancer last month. It's so prevalent..... scary.

I know I'm not directly dealing with this (knock on wood) but I send you my hugs for having to deal with such a complicated, physically and emotionally, matter.

Good luck and keep that chin up.

QUOTE(undine @ Mar 6 2007, 12:29 PM) *

Well, here I am again, opening myself up like an idiot. But I'll do it. I hate to be the spectre of doom but I am an HPV unsuccess story. I don't have the warts I have cancer cells. I don't know where else to post this. I need a hysterectomy. I need to connect with women who are going through this or have gone through this procedure. I have tried to privately contact a few other HPV-ers here a year or so ago to talk about it and was rejected, so don't respond if you are not up to talking with me. I have nowhere else to go. I have no support system in my life for this.

undine
tnx moonpie
if anyone sees this and can talk to me about their experience w/this surgery, please email
fuego_lento
Undine, I'm sorry you're going through all this. How did your doctor reach the conclusion you need a hysterectomy? Is there anything else that can be done before taking such a drastic step? (I'm sure you've already asked this, but I'm asking anyway.) What kind of timeframes are at play? What are your options as far as having kids, assuming you want them? Can you freeze your eggs before the surgery? I'm sorry if I'm asking stuff that's too personal or painful, or you're not ready to think about, or anything. I'm concerned and I don't know how else to show it.
undine
QUOTE(fuego_lento @ Mar 10 2007, 12:15 AM) *

Undine, I'm sorry you're going through all this. How did your doctor reach the conclusion you need a hysterectomy? Is there anything else that can be done before taking such a drastic step? (I'm sure you've already asked this, but I'm asking anyway.) What kind of timeframes are at play? What are your options as far as having kids, assuming you want them? Can you freeze your eggs before the surgery? I'm sorry if I'm asking stuff that's too personal or painful, or you're not ready to think about, or anything. I'm concerned and I don't know how else to show it.

Yay! Someone cares! 2 people care! This is a very hard issue for me to deal with, so I will blather on and expose my weakness to all of you. Because I need to air this issue in a forum of sex-positive women who can understand what I am feeling. I have no support IRL. Just women who don't want to talk about teehee that nasty stuff. I am sick of women who can't talk like adults about sex for chrissakes. Honestly. Even my female gyn couldn't have a normal adult conversation with me about my concerns and just brushed them aside. WTF?
I have HPV 16/18 and recurrent cells on PAP that are 1) high grade squamous (can be easily watched and behave in a predictable manner) and 2) high grade epithelial/glandular (hard to monitor since they are higher up in the cervix and are apparently known for their ability to suddenly go apeshit and start producing cancer cells without warning). I have carcinoma-in-situ, meaning the precancerous cells are localized to a certain area (coincidentally, 9 o'clock, the exact spot my ex's penile bump/cluster-of-weird-dry-skin used to hit in face-to-face penetration, yeah my gyn never told me to use a fucking condom so after each surgery his spot was in contact with the newly excised area fun fun fun thanks a fucking lot). I have gone through many LEEPs and a cold knife cone. The last surgery left me with a totally different sexual response than I had before. It's like some nerves were cut or something. I also have scarring on the cervix that makes deep penetration from behind painful now. The kids issue doesn't really affect me. The idea that the surgery will further effect my response scares me. I am a very sexual person and I define myself through my sexuality. I am not your usual clitty grrl or Gspot addict. My best orgasm comes from penile stimulation/pushing against the cervix. My orgasmic contractions feel like they are actually in my uterus. When that is gone or there is scar tissue causing pain there, what will I do? I feel like I am being de-sexed somehow, like my womanness is going to be taken away. Which is why I seek out women who have had the surgery to reassure me, if they can. Most women I have talked to (total hyst. and partial) wish they never had it. I just don't know what to do. I wish I could cry but I can't. It's all bottled up inside and it is just eating away at me. end rant.
fuego_lento
Oh, sweetie, that sucks. (I wish I had some more grown-up way to say it but I really don't.) Please seek out a second and third opinion -- preferably from an oncologist who knows a lot about cervical cancer -- if you haven't already done so because a hysterectomy still sounds kind of extreme to me.

As for losing or changing sensitivity and sexual response, I'm sorry that previous procedures have had that effect. I'd be really upset, too, if that were happening to me. Are there any support groups in your area that you could go check out?

Meantime, take a look at this site: http://racoon.com/cgi-bin/dcforum/dcboard....5&conf=Main (Too tired to make the link all pretty.) It's an offshoot of the herpes site I read from time to time. The HPV info hasn't been updated significantly in a while but the links are pretty good and the tech-types there really know their stuff if you want to ask questions.

I don't know anyone besides my mom who's had a hysterectomy, and she's not the type to talk about "down there" so I can't ask.

I wish I could say or do more to help you, but my experience is limited to the herpes from hell and genital warts that cleared up easily. Vent away -- that's why this thread exists!
bites
Right, I've noticed something - I asked my GP about it a few months ago on my last visit and being the prick he is he waved me away like I'm an idjit. But it's happened again, and I want to know what you guys think before I suck up the courage and energy to go to the GUM and ask what they think.

I've been having outbreaks since last year, more or less continuously, right? I've never been quite convinced it's herpes because of the condition of the sores; they're deep and pus-filled on the mucus membrane, white and round on the labia (both of these itch like craxy) and just like skin-colouyred zits on the edge of the outer labial lips. They don't really resemble herpes sores in any pics I've seen on the net and believe me, I must have seen them all by now. Ok, they itch like motherfuckers, which I know is a herpes symptom, but anyway.

The thing is, last year I had an acne outbreak, and took a standard tetracyline drug for it for two months, as I've done before. Within a couple of doses, the sores lessened, healed and the labial tissue looked incredibly healthy. When the course stopped, they came back within a week and a half. I brought this up with my GP and he said, "Well, herpes is a VIRUS, so antibiotics can't cure it." Which was the POINT, that maybe it wasn't herpes but as I said, he's a prick. I was feeling incredibly vulnerable last year, on the edge of psychological collapse and didn't have the energy to argue, and got sent home with a script for 800mg aciclovir instead.

Anyway, I had another acne episode starting in February and went back to get a repeat of the tetracycline. Again, sores disappeared within days. I still have a few bumps, but they're painless and don't ooze pus when prodded. The condition of my genital area for the past two months I've been on the antibiotics is great compared to the past year when I wasn't on them.

I've also been tipping tea tree oil on my bits and it seems to help, too. Tea tree oil it anti-bacterial.

Now all this; antibiotics that are prescribed for acne and boils working on my sores, seems to indicate to me I have a bacterial infection of some kind. I've trawled the net for hours looking up every single kind of vulval sores etc and the I've come up with: herpes aggravated by a bacterial infection OR a bacterial infection, possibly related to apocrine or fordyce glands which allegedly respond to antibiotics, including tetracyclines. Or just a fucking weird bacterial thing, maybe complicated by yeast as well.

What do you lot think? I'm coming to the end of this course of antibiotics, I have another on the way and I'm enjoying having a healthy feeling and looking vulva. I did test negative for herpes last year but the GUmn clinic nurse told me to assume I had it anyway. Am I off my head and in denial or what? I'm terrified of going back to the clinic, actually, and being treated like a moron. All i can think is that they spent approximately five minutes thinking about my problem ; I have spent the last year watching the progress of this condition and have spent more hours thinking about it and researching it than I can count. SAre there any tests other than the standard STD ones (which I've already had and proved negative on all counts) I can ask for?
lapis
Bites, do you shave? Sounds like folliculitis to me if you are shaving your parts. If this is the case, you might try not shaving, suing an electric trimmer or razor, or swapping out your razor after 5 or less uses. I could be totaly off, but it sounds bacterial and like hair follicles. Good luck.
bites
QUOTE(lapis @ Apr 5 2007, 11:25 PM) *
Bites, do you shave? Sounds like folliculitis to me if you are shaving your parts. If this is the case, you might try not shaving, suing an electric trimmer or razor, or swapping out your razor after 5 or less uses. I could be totaly off, but it sounds bacterial and like hair follicles. Good luck.


No, I don't shave at all, just trim. It does seem concentrated on the hairier areas, though and I noticed reading about apocrine gland infections that they advise against hair removal because it tends to make things worse.


lapis
Bites,
I am so curious about this. Have you checked out molluscum as a possibility? It can be treated with over the counter acne stuff--I still wonder if it's some kind of ingrown hair situation. Here's the link to molluscum, just a thought.

http://en.wikipedia.org/wiki/Molluscum_contagiosum

Good luck.
kelkello
Octi said something to me in Okay about a herpes vaccine. Has anyone heard of this?
fuego_lento
As far as I know (I'm behind on my reading, here), the herpes vaccine is only effective in women who have no antibodies to HSV 1 *and* 2, so finding test subjects has been a struggle. I think it's interesting that it only seems to work in women, but the number of people of either gender without antibodies for either strain of herpes is minimal unless we vaccinate girls as infants. I mean, it's estimated that 80% of the US population has or carries HSV1, and that 20-25% have or carry HSV2.

Either way, the vaccine isn't expected to hit the market for at least another few years. It sounds really promising, test subjects or no.

I just hope the religious right doesn't seize on it like they did with the HPV vaccine. At least plenty of fundies -- statistically speaking, of course -- have herpes too and probably want to see it gone.
kelkello
I'm actually against vaccinating very young girls for HPV. The marketing campaign for Gardisil makes me a little ill...they fail to mention in any of those emotionally charged commercials that HPV is a sexually transmitted disease. My ex-boyfriend's doctor tried to give it to his 12 year old daughter and he refused it. While I'm all for protection against disease, I don't think trying to manipulate people into get a vaccine by playing with their emotions is the way to do it. There's also rumors that soon schools won't let girls in without the vaccine. I don't agree with forcing vaccines on people unless they protect the general population from diseases that pose a serious, contagious threat. They make kids get chicken pox vaccines now. The links between vaccines and autism alone gives me alarm. I think vaccines for STDs should be given on a voluntary basis to informed patients.
pixiedust
There's a lot of people who are against Gardasil because it's a vaccine for an STD. I know my mother was in a snit when she first heard about it...not knowing that I had HPV. While I agree that *most* 12 y/o aren't sexually active...a lot will become active in teh next few years...and how would you really put an age on it? AT leats by picking 12 people can reassure themselves that no...probably not an issue yet..but when it does happen, the immunity will be there.
I do think they are jumping the gun with trying to make it mandatory, but from everythign I have read, most of the politicians who were pushing that backed down now. It will probably take a few years before we know of all the possible side effects from the vaccine.
That said...when minipixie gets old enough...she's only 5 now, if it is still considered a safe vaccine, I will probably have her get it. Until I got HPV there is nothing on God's green earth that would have convinced me that I needed it no matter how informed I was. I know so many people who have it that are not sexually promiscuous..it just takes one person sleeping with the wrong person.
kelkello
Pixiedust, I understand where you are coming from. I never thought in a million years I'd get herpes. But I did. But I think the vaccine should be something that parents consider very carefully and discuss with their daughters. And I think what really chaps my ass was the idea that they were trying to make it mandatory. If they are backing down, I'll calm down. Forcing that vaccine is just way to save the insurance industry money. And like you said, the long term side effects are unknown. I think I've been reading too much of the anti-vaccine literature in my chiropractor's office!
p_176
there was a discussion about this on my other chatroom - the vaccine should probably not be made mandatory because no one knows yet of the longterm effects and how long the vaccine will protect [our] bodies.
kelkello
Okay folks, I need help. I have HSV2, which many of you know. The guy who gave it to me did so inadvertantly. We have since broken up. I felt that as long as I was with him, it was okay because we both had it. Now I'm out there with this alone. And someone cool wants to have coffee with me. And I want to go. But I'm terrified of seeing anyone for fear of things getting serious and having to tell them I have this and getting rejected. Does anyone have any advice on breaking this kind of news to someone? When do you tell them? How do you tell them? I don't want to close up and be alone forever. But I don't know how to put myself out there and risk being a pariah.
edie52
(((kelkello))) I feel you. It's hard. But I know just from seeing you around here that you're strong and intelligent, and that you won't let this get the best of you. First of all, you can go on one date and just feel it out, see if you even really like him in that way, take things slow and try not to have set expectations.

As for how and when I'm really not the person to ask, I've screwed up my fair share, but it's safe to say that you should do it in a way that is honest and matter-of-fact, and that is neither pessimistic or deceptively nonchalant. And when- not on the first date, but obviously before you sleep together (and every relationship progresses so differently- you might want to take things slower than usual, but don't do it just to trail him along and avoid telling him, that makes it so much harder in the end). I do know that it's relieving to get it out there and usually not as bad as you imagine it'll be. Remember that he may have experience with this stuff, and even if he hasn't he should be understanding on some level if he's worth his salt.
lapis
Kelkello,
I hope things go well and that you find a way to talk about this that's comfortable for you. I remember reading this
http://www.salon.com/mwt/col/tenn/2006/11/...rpes/index.html and it may be helpful. Cary Tenis' treatment of the problem sucked in my opinion (you'll see--it seemed like a joke), but what was fascinating was the follow-up letters. You will find people with all different experiences--maybe start with editor's choice and then buy a bottle of wine and some toasted almonds and sit down for the rest of them. The thing that is hard is people have HSV and HPV all the time without knowing it and then the people who do know either feel like pariahs or are suddenly responsible for something that they probably contracted without having any clue. One of the things it might do for you is raise the stakes of relationships so that you achieve a level of intimacy and trust and future-potential before getting it on, which could be really cool and empowering. As an extreme example, I have hiv- friends who choose to have sex with hiv+ people and the depth of their relationships is completely different. But your situation is not that hard. I remember being freaked out about possibly contracting hpv when I was young and my doctor was like, "well, you can never have sex, but that's about all you can do." Sex always entails risk and you are better off knowing that so that you can treat yourself and your partners with honor and care. Hope this isn't offensive in any way, just throwing out some perspectives. Even plants have stds--it's natural--so what is unnatural is the moralizing judgment that sometimes gets attached to them.
kelkello
Thanks for the input, lapis and edie. Have either of you had positive experiences in telling someone? Or do they all run screaming? I'm not particularly worried about this date...it's just a date. But one day I will meet someone and it will evolve into more than just dates. I want to be able to tell him before it gets so serious that he feels betrayed but timing seems to be difficult for me. I also want to wait until he really gets to know ME and think I'm the bees knees...if he sees how cool I am, he might not run the other direction immediately. But, I sometimes tend to blurt out things that shouldn't be blurted. I will try to just go slow and remember that dating does not equal sex. I try to remember that I'm a human being, not an epidemiological nightmare. Hopefully a guy will see that too.
lapis
Kelkello, This sounds like a good approach--going slow is a good way to take care of yourself. This is an important issue for me in terms of supporting others and thinking about what I would do in such a situation--not so much from a place of personal experience. My friends have told their partners about their hpv and hsv--I know some who have not been forthright about their status which resulted in a lot of pain and mistrust--but the ones who have told have not seen much in the way of rejection. Let there be play! I think honesty and being realistic get points in this. I have told people that it's statistically likely we have been exposed so it's possible something might come up in the future. Doing the best you can is all you can do, right?
edie52
I had an alright experience. I was so freaked out about telling him that I told him I had something to tell him and then couldn't say it. By process of elimination he guess it was an STD and he confessed to me that he'd had HPV. I still couldn't tell him what it was. He finally guessed and it turned out he didn't know much about it at all, in fact he was quite misinformed. He was sweet and understanding but said he needed time to absorb the information and I said "take your time, do some research, whatever you need." The shitty thing was that he didn't do that and we jumped into sex, which was fun, except that he was still misinformed. It was as though he didn't listen to the info I gave him or was trying to ignore the fact (he kept wanting to do it without condoms, etc.). I still don't know if I ever gave it to him, which is a bad feeling. But he can't blame me for not telling him.

After that experience I actually feel better about the whole prospect of telling- knowing that it's not as bad as I imagined, and also that I need to be direct and establish open communication about it. I'm just waiting for the right guy.
DaisyJane
Hey kelkello - i know you posted awhile ago but Ill maybe try to help.

I have HSV2 also - im 23 and had the first problem with it when i was about 20.

I was with a guy for 5 years and I am pretty sure of where i got it from (before him) and the bf was supportive and everything. We then broke up last year. After that I was really freaked about being alone in the world with this disease and not knowing how to handle myself or future relationships.

Now, one year later, I live with my new wonderful boyfriend and were talking about engagement.

I dont remember exactly how it happened but hanging out one day we were doing the 'tell a secret' game and I told him I had the disease. I kind of just shut up and waited to see what he would do. After a while he was like "I hear alot of people have that" and the next day he researched everything.

He quickly understood my problem (his sister had Chlamydia (sp?) and he was her support) and accepted me. We were very careful with sex and now that we are in a really ocmmited relationship, he has no problem with it.

He somehow just kind of got used to it guess?

I think theres no need to tell someone right off the bat, he may have gone a runnin right away. But when it comes down to it - and it sounds soooo cliche - if they cant accept you and love you for who you are and anything that comes with you then they dont deserve you.

There WILL be that person out there who will say "I have it too" or "Huh. Hey wanna order pizza?"
I promise. I know its scary but it does turn out ok.
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