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  1. shitshow


    I just got diagnosed yesterday 2/25/2019. I've almost been on meds a full 24 hours. It's been an actual shit show of a week. This week has been insane. At first symptoms didn't show up until four days after having unprotected sex. I have had chlamydia before (May 2018) and the symptoms looked the same. Wasn't painful until the fifth day. I kept asking my doctor for tests. "You have to set up an appt to get your lab paperwork (they don't do actual testing at my office, you have to go to the local hospital to do them)." So I get in there on the fourth day and nothing had even showed up yet. So I went to the hospital the next morning (Friday 2/22/19) and got my tests done. Nurse told me I could come and get results later that day. I come back and they only have my hiv one done, and I already knew I was negative. They told me to come in the next day and all my tests would be done. At this point the symptoms are getting worse and I'm starting to feel pain and itchiness and the nurse says she can't do jack sh it (it's JUST a hospital, not like anyone knows how to do THEIR job right?). I come in next day- absolutely freaked. I'm hysterical, crying, and I want some fu cking answers. I walk into the main check in area to find a sign that says GO TO ER RECEPTION. I had called the hospital an hour beforehand to set my results aside so I don't have to wait 10 years for some stu pid papers. I walk to the ER, and I'm shaking like h ell. I look like I'm crazy and I ask for my paperwork. "Sorry? We're the ER and we don't take care of that stuff" Me: LOOK. You guys have been bouncing me around for the past 3 days. Whatever the he ll I have is there and I KNOW I HAVE SOMETHING. All I want are my lab results. I called the front office and they said they set the papers aside and I could grab them. Whoever is manning the main office is on a break or something bc their sign said to come here so don't tell me you cannot help me. I have a physical condition and it's driving me insane. I've been going batsh*t about this since Thursday (at this point it is Saturday). Nurse: OK we found your paperwork in the lab (didn't even ask for my ID) Me: Finally. Jesus. (I look at all my tests and they are all negative) WHAT DO YOU MEAN NEGATIVE??? I can't even sit down and I have to cry my own eyes out when I pis s?????? You mean to tell me that I trust the fing system for once and you tell me to go blow myself when I'm in physical pain? I need to be looked at? Where even is the herpes and trichomoniasis tests???? (the basic tests the doc gives you for stds are gonn, chl, syph, and hiv) Nurse: You have to ask for them Me: Can I have then please?? What buzz words am I missing? What part about THIS IS AN EMERGENCY I NEED HELP do none of you get? Nurse: Ask your doctor. Me: Yeah on a weekend. What help. Nurse: All your tests came back negative????? What's the problem?? Me: There is clearly something wrong and I am SCREAMING FOR HELP and you, someone who works at the hospital, are going to stand there behind that desk and tell me you can't help me? You're turning me away when I beg for help? Nurse: The results are negative... I just storm out at this point and I'm hysterically crying and screaming at the top of my lungs because I'm in full panic and manic mode. I don't know where to turn. I go home for my dad's help and he takes my car away because I'm so upset (we have been on somewhat of a break bc of this whole fiasco and I've been staying with my friend) that I start frantically calling my friend and looking up bus schedules (she lives 20 miles away and such). She tells me to lay low and I'm ready to kill someone, if not myself because of how frantic I am. My dad doesn't understand this and it's absolutely aggravating because I originally went to him to vent and what I got was a lecture and a threat to kick me out of the house. After I left the hospital, I made the even bigger mistake of asking for a hug because he made me come inside and listen to him lecture for a f/ing hour, and then I was stranded and no buses were going at that point (it was like 8pm and hours are shorter on weekends). Next day I drive out to my friend's and the whole day I'm suffering and trying to work horses (I'm a 3 day event rider and my friend is a horse trainer, I'm her groom/assistant) and move items from farm to farm without passing out or upsetting the sock in my crotch. Next morning, yesterday (MONDAY 2/25/19) I call my actual doctor's office and demand that I see her today. They fit me in a 2pm spot. I take a shower and 10 minutes later I get a text and call from the reception saying doctor is out because she has the god da mn F L U. At this point I'm ready to give up. I have to put socks on my vagina so that the lesions don't touch each other and leak, I cry when I use the bathroom and I'm still scared to use the bathroom because of the infinite pain. I have no clue why I didn't do this in the first place, but my friend lives by a Planned Parenthood and so I marched my as s over there and I asked to be physically looked at and such. They fit me in. Nurse (one that checks you in, not the real doctor) asked me what symptoms were and what I've been taking, if anything. There's a medication that's made for humans but given to horses called SMZ. It's a STRONG antibiotic and my friend has Hashimoto's so her and her mom (her mother is my horse's farrier lol) told me at the very least take SMZ 3 times a day. I figure why the h ell not because it's not like anything will get worse. It just stopped the heavy slippery discharge, nothing else. So she admits me to the scary room with the freaky foot pedals, and I've never even seen a f uc king gyno? I don't know what to do but start hysterically crying. Doctor comes in ten minutes later and she tells me that she has to take a culture swab. The fact that I had just pis sed and disposed of my sock, opening all my lesions, I can barely even wipe my own as s. I'm sitting there crying hysterically telling her not to judge me because I made a stupid decision to have unprotected sex with a sh itty guy. She tells me she's gonna touch me with the testing swabs and the moment she touches me I'm crying and screaming at the top of my lungs PLEASE STOP PLEASE PLEASE STOP STOP STOP IT HURTS. I don't know why she thought this was a smart idea to tell me this but she straight up told me AND I QUOTE!!!!! "This is the worst and most severe case of herpes I have ever seen. I've been doing this for 36 years." Well that's awesome, I'm another statistic. I can't believe me it took 1 second to tell me I had herpes when I had been driving myself clinically insane for the since the last Thursday (this lasted Thursday to Monday). She gave me my medications and gave me a name of some supplements, and told me about socks being a good idea and whatever, pour water on myself when I pee so that it washes everything away, blah blah. Gives me my papers and I go back to my friend to confirm I have this fu cked up incurable disease. All the stress prior was gone. Done with my tears. I'm almost done with my first day of taking the meds. They feel a bit better. Unfortunately I'm on a time limit because I can't physically ride in this major horse show if I can't even sit on a still object. Hoping this at least stops feeling so painful by Thursday for my dressage test on Friday. thanks for listening the doctor at PP suggested I find one so I don't feel so alone
  2. @Micah and I are trying various ways to spread awareness and make something happen for those of us that are tired of living with herpes. Although YouTube is a good avenue to do that, we wanted to also try to write to celebrities, specifically those that do reply to fans and would possibly like to help the cause and fund herpes research. Now I wanted to ask HC members to please contribute any celebrity names that they know of who respond to fans in the comments below. *Also if you know the address of such celebrities please PM me or Micah. Thank you. Please get involved if you can as well. We need more people to try and do something and take a stance.
  3. HSV. Everyone's favorite topic! If you read my other piece, you know about my struggle with Viral Meningitis. But now I get to share with you (because it was just shared with me) how I got it. As if I wasn’t already depressed, hurt, and confused, here comes the nurse from the hospital calling to tell me that one of the possible causes of Viral Meningitis is the Herpes Simplex Virus and they tested me for it when I was there. Surprise! I have the Herpes Simplex Virus type 2, or as I like to put it, Genital Herpes. I cried almost as loud as I did the day I got the severe headache from the Meningitis. I immediately thought, I am 21 years old and my life is over. I thought about all the cons, no more dating, the difficulties having children without infecting them, dating rejection, my friends judging me, having to worry about infecting people around me, every possible negative thought came rushing at me all at once. I can not believe this is happening to me. I had to mourn the death of the person I once was for a few days of course, but after coming to, I realized that although it is not curable, this is not a death sentence. I thought let me learn a little more about this before I just shut out the world and everyone in it. I found that 1 out of 6 people have HSV. So if you know more than 6 people, one of them most likely has some form of HSV. Some people know, some people don't, but they do. So yeah that is A LOT of the population. Some people get symptoms like itching, burning, and bumps on their genitals sometimes and some people can go years without having one single outbreak. There are Antiviral medications and even suppressive treatments to help lessen the outbreaks. To prevent the spread of the infection you can: Use condoms getting regular STI tests and ensuring sexual partners also get tested regularly reducing the number of sexual partners being in a long-term monogamous relationship with an uninfected person avoiding sexual activity during outbreaks of the herpes virus using anti-herpes medication daily if one partner has the herpes virus abstaining from sexual activity Source: WEBMD.com The best thing to do if you find out you have HSV is to contact your doctor so they can answer all of your questions and help you find the best option for treating the infection. On another note, I felt like although I could treat it to minimize outbreaks, dating is going to be a nightmare from now on. I thought, who would want to be with someone with Herpes, one of the scariest STIs out there. I immediately thought ok, well what if I find someone with herpes like me to date, I could possibly find a guy that way. I mean, who could turn away someone with the same condition as them? This notion, I soon found out was a problem. I signed up for a HSV dating site and I realized that I was scared to share too many details about myself and even post a picture of myself. I noticed that I was scared to reveal that I had herpes even on a HSV dating site. Odd, I know. I was struggling accepting my truth. I went on to search for forums, discussion boards, etc (as I did when I found out I had Meningitis). I was searching for people my age with HSV who were struggling in the LOVE department. I found them. I could not help but fully relate to every single person on the discussion board. It was the best thing I could have ever done for myself. One blogger expressed how she would never sign up for a HSV dating site, as it can influence people who carry the virus to conform to only talking to or being with others who have it which is crazy. She opened my eyes to understand that we are all people and should not live under the stigma that Herpes is this big scary monster thing and we have to alienate ourselves from the rest of society. After all HSV is really just a few outbreaks of uncomfortable bumps and itching. It's not to say you shouldn't be careful with your health, it is just that the stigma behind Herpes is that it's a death sentence and its not. The posts made me laugh and informed me of so much. People my age, in college just like me, everywhere, going through the same exact thing. One girl and guy on the board went on to say don't be afraid to disclose that you have the virus to people. The girl told about 50 guys and had only been rejected by about 5 of them or so. She had been in 7 relationships post HSV. A guy said the girl he met had it and he didn't really care and slept with her. All of this was good news to me, not because I just HAVE to be in a relationship or have sex, but to know that I don't have to restrict myself to find love or be ashamed of myself for my condition. I also learned to ditch the stigma because its not as bad as anyone thinks and is easily contracted. Anyone can get it and not even know it. I don't know if I am quite as ready as these folks to be as open as they are with HSV, but I can say that I had a huge sigh of relief that I can be if I choose to. Tip of the day is to not be afraid of rejection. Not everyone will reject you.Take a chance, try it, disclose to someone and be positive about it, because you won't know the outcome until you try! These are the two websites I went to to research: The first is the forum from the people’s stories that I used in my entry. The other is an article. I hope you find these as helpful as I did. https://herpeslife.com/herpes-forum/discussion/8423/dealing-with-herpes-in-college The Overblown Stigma of Genital Herpes - The Atlantic
  4. https://nypost.com/2018/05/26/my-instagram-model-ex-gave-me-herpes-suit/ Story is from the NY Post. She convinced him that the sores were due to masturbation and she insisted on unprotected sex. I feel bad for him she seemed deliberate in her attempts to have sex with him knowing she had herpes and hpv. He now has warts as well. The stigma never ends because of stories like this and those who actually disclose suffer for it.
  5. I would like feedback from this forum. https://www.cdc.gov/std/herpes/screening.htm Please take a look at comments from the CDC regarding herpes screening and transmission Genital herpes is a common sexually transmitted disease (STD). It is caused by herpes simplex virus type 1 (HSV-1) or herpes simplex virus type 2 (HSV-2). Most people who have HSV-1 or HSV-2 don’t have symptoms. There are a lot of questions about herpes tests, and this page will help you understand CDC’s herpes testing recommendations. Genital herpes is common. Why doesn’t CDC recommend testing everyone for this STD? CDC does not recommend herpes testing for people without symptoms. This is because diagnosing genital herpes in someone without symptoms has not shown any change in their sexual behavior (e.g., wearing a condom or not having sex) nor has it stopped the virus from spreading. Also, false positive test results (test results that say you have herpes when you do not actually have the virus) are possible. Even if you do not have symptoms, you should talk openly and honestly about your sexual history with your doctor to find out if you should be tested for any STDs, including herpes. Although CDC does not recommend that everyone get tested for herpes, herpes testing may be useful in some situations. Herpes blood tests (also called type-specific HSV serologic tests) might be useful If you have genital symptoms that could be related to herpes, If you have (or have had) a sex partner with genital herpes, or If you want a complete STD exam, especially if you have multiple sex partners. Please note that while a herpes blood test can help determine if you have herpes infection, it will not be able to tell you who gave you the infection. Wouldn’t testing everyone stop the spread of genital herpes? We don’t know. There is no evidence that diagnosing genital herpes with a blood test in someone without symptoms would change their sexual behavior and stop the virus from spreading. In addition, without knowing the benefits of testing, the risk of shaming and stigmatizing people outweighs the potential benefits. For these reasons, testing everyone for herpes is not recommended at this time. Are people with genital herpes at increased risk of getting infected with HIV? Yes, studies show that HSV-2 infection increases the risk of getting HIV infection, even when there are no symptoms of genital herpes. HSV-2 infection can cause tiny breaks in the genital and anal area that allow HIV to enter into the body. Herpes infection also attracts the type of cells that HIV infects (“target cells”) to the genital area. This increases the chance of getting HIV, if exposed. Can testing and treating genital herpes decrease the risk for HIV infection? No. Studies show that testing for genital herpes and treating with herpes medications does not lower the risk of getting HIV. Why have false positive tests been used as an argument against routine testing for genital herpes, but not for other STDs, which can also have false positives? False positive test results are test results that say a person has a disease or condition when they do not actually have it. False positive results can occur with many diagnostic tests, including STD tests. The chances of false positive results increase as the likelihood of the infection decreases in the person being tested. False positive HSV-2 results can happen, especially in people who are at low risk for a herpes infection. Also, we do not know if people who test positive for herpes will change their sexual behavior as a result of a positive test. This tells us that the harm of a possible false positive test may be a greater concern than the benefits of an actual diagnosis. Unlike curable STDs, such as chlamydia, herpes infections are life-long, so it is especially important to avoid a false positive test. How does it make all of you feel that the CDC says it wouldn't change sexual behavior for people to know they have the disease? How about the fact that the CDC acknowledges how bad the stigma is so they think it is BETTER not to routinely test people? Has having herpes changed YOUR sexual behavior? Have some of you decided NOT to have sex? This is what we are dealing with, and the more we sit on HC and don't band together to fight for change, the worse off we will be. I am shocked at reading this. We are letting the CDC speak for OUR experiences and I find them to be wholly inaccurate. There would not be 60,000 people on this forum if having herpes did NOT change the way people viewed sexual behavior! If this makes you angry...frustrated...post about your thoughts. @OhFuckMyDickHurts @GlitterDx @Rational Vaxxer @dont quit!17 @elnino @Sean123 @crisper @LiveLife100 @Whyyyyy @SnowAngel @West end gal @Lauren401 You may say...so why does this all matter? Well the CDC is short for Centers for Disease Control and Prevention. How do you CONTROL and PREVENT spread when you won't even test people? The stigma is SO bad you won't test people?! We will be posting a very lengthy letter addressing these comments and to the entire twitter community. We cannot stand for this. We are DONE letting the CDC and other institutions speak for how WE FEEL. We are done letting them spread misinformation. Justice is coming. Will you fight with us? If this gets you amped up..join many of us on twitter.com https://twitter.com/Thehopeisnear https://twitter.com/LED401
  6. owlinahat

    Vice video

    So vice just uploaded a video about herpes think it’s part of their tonic videos and while it’s great that they’re giving out the info I feel that they didn’t give enough information in the video at all but that’s not what my problem is. I’ve been trying to keep a positive attitude about having this disease but after reading the comments on said video I think it’s safe to say I feel like utter crap, pretty much everyone is either making a joke of it or vocalising how disgusting they think it is! I hate the fact that getting a couple bumps on my genitals every so often marks me as some kind of person that should quarantined. I honestly feel like if there isn’t a cure soon that I’m not sure I go on especially if the comments on that video are anything to go by. I’m sorry if this is a long post I just needed to get all this out there
  7. I got my first herpes fear from a male prostitute. I did not know too much about herpes at the time, and thought it was easily tested in a free clinic. While most of the sex was protected, the oral sex was not(probably because HIV spreads less during oral). He also claimed to get checked often. I tested negative for all the STDs, including HIV. I later tested Negative on a herpes blood test. But I'm skeptical on my results. Reason being that it is possible to get a false negative, and the person I had sexual relations was a prostitute who done this with plenty of other men. With all the stuff I hear about herpes and how its spread. Its a no brainer that most people who are hookers and sex workers get it easily because of their profession. Every single pornstar for instance has it. This guy also has regulars and clients. He done this most likely unprotected and on a daily basis. While he might not have sores or lesions, that doesn't mean anything since herpes can spread anyways though shedding. Why should I not doubt this? I hear some people smuggly insisting that these blood tests should not be taken as accurately as they should be, and the person I had sex with has a very very high chance on having it. Is it really that paranoid? Can someone give me some medical advice because every professional I asked give such vague and unhelpful advice that only brings me further to my beliefs. I hear people tell my I am going all about it wrong, but they are not giving me good reason to believe in such. And please spare me the "!*@* shamming" nonsense, as well as the "herpes isn't deadly" excuse. Yes, its not deadly, but that shouldn't mean you should spread it to everyone else. Thats irresponsible and disgusting.
  8. Optimistic Prime

    First Time Posting

    Ok, 3 months ago got Hsv 2 from my gf. Now ex. She did NOT disclose. She DID know she was Hsv 2 positive. I'm generally a really happy guy. Anyways I went on a couple of dates and got shut down hard tonight. Hsv for me does not hurt or burn pain etc. But the reaction from my date this evening that hurt. Wanted to say thanks for this site being here to read and it really cheered me up Night, Optimistic Prime
  9. Hi Everyone, Below is my story but first i'm doing some research on HSV to better understand the virus and find out how you have managed with the virus Could I please ask you to complete the following survey. It is 100% anonymous and I really appreciate your time and answers - https://aaron485.typeform.com/to/NLqHqL I was diagnosed last year and to begin with it tough to get my head around and to deal with. I had only been dating my girlfriend at the time for a few weeks but she stayed with me(at the time I thought I was lucky but have learnt a lot since then). 2 of her sisters have herpes which helped as she already had some knowledge about the virus and was able to help me quite a bit and knew what precautions to take to stop her getting the virus. We eventually broke up and to begin with I had no clue how I was going to continue my sex life. In my first year I was getting at least one breakout a month and they were pretty bad and painful but I have since realised that my choice in lifestyle was the cause of that. I made the necessary lifestyle changes to stop the breakouts and now I hardly ever get them and they are tiny and disappear very quickly. Since diagnosis I have learnt a lot about the virus and even more about my self and have worked through the mental issues and the stigma with society. I am now comfortable with the virus and I'm comfortable telling people because we are all imperfect in one way or another and everyone has something that they are shameful about(especially people without herpes). My goal is to become an ambassador for herpes and lead the movement to remove the social stigma. The only way to do this is to get talking about it(which isn't easy) but I want to be part of the solution instead of the problem. I would love to hear from people and hear your stories and ideas. Be safe and know you are not alone!
  10. ScaredBean

    Help me... I'm scared...

    Hi there... I'm Nikki. I'm 19 and I live in New Jersey, USA. I've been with my boyfriend (main partner, J) for about six months now. We're in an open relationship. I was dating someone for a few weeks before breaking it off. The last time I had sex with that guy was about a month ago. Around a week ago I started experiencing intense itching, which I chalked up to a yeast infection (which I've had before) and didn't worry too much. But I was scratching a lot. And my nails are sharp. Also, J and I had really rough sex around that time. Not long after I started experiencing pain/discomfort, which I again blew off as a consequence of scratching myself and having rough sex. But yesterday the pain was unbearable and there was a lot of swelling. We went to the emergency room to find out I have a UTI as well as Herpes. Whether it's 1 or 2 I'm not sure, and I don't really know the difference. J got tested about two weeks ago and tested positive for Herpes 1. But he said he's had cold sores on his lips all his life. Is it possible I got Herpes 1 from him performing oral on me? Or was it from the guy I dated a few weeks and he just didn't show symptoms? (I don't remember him having sores or redness of any kind.) Regardless, I'm really scared and ashamed and confused by this event. I've been in unbearable pain for the past 72 hours. I can't walk or even lie down in certain positions because the friction against my clothes (and even my own skin) is agonizing. I have sores all over my genital area; specifically, there are around eight sores on my clitoris alone. Nothing I've been told to try helps. Vagisil, diaper rash cream, antibiotic ointment, even the medicine the hospital gave me. I also get fevers and sore lymph nodes. Please, please, someone out there... Help me... I'm sooo terrified and embarrassed. I hate myself for letting this happen. I blame myself for ruining my life as well as my wonderful boyfriend's life. Our lifestyle has to completely change, (possibly) because of a stupid mistake I made. I don't know why I'm here, I just... I need to know I'm not alone. I need advice. Please. Thank you in advance...
  11. I need to get something off my chest... HSV impacts the mental status of individuals. HSV makes people feel sad, angry and fearful. There is a lot of guilt, shame, and blame. People are concerned about transmission, dating, disclosing, and sex. There is a lot going on and that's just the psychological stuff. There's the physical aspect of being in pain and discomfort all the time. There are support groups. There are 61,000+ people on this website and hundreds of users here everyday. There are tons of forums (subreddits like r/herpes or r/HSVPositive). So we want a cure - right? So we want better treatments - right? So we want better and more research - right? So we want our scientists to have more funding - right? The CEO of Genocea (making a therapeutic vaccine for people who have HSV) said on Honeycomb that a petition with a lot of signatures would be very welcomed in any company that has conversation with the FDA on the topic of herpes. At this time, GEN-003 (from Genocea) is slated to hit the market (if approved) in 2021 at the earliest. Sorry @Chip Clark I had to refer to your comment (seen below) I took the liberty of making a petition (seen below) because I am frankly sick and tired of being sick and tired. I am sick of not having better treatments. I am sick of having to worry about transmission. I am sick of being in pain every single day of my life. I am sick of being worried about being rejected because someone else was so worried about their self-esteem and rejection that they couldn't be honest with me and exposed me to the disease despite having lesions that were not visible to me (I used protection). I am sick of hoping that someone will come out with a cure every single day of my life. ) This website has over 61,000 users. Some come because they can't deal with this disease. Some come on this website every day hoping to find some new medical breakthrough. We can keep saying "why doesn't the FDA care?!" "Why don't doctors care?!". Here's the truth: They may not even understand the toll herpes has on the people suffering from it. Maybe that's because some people with herpes do not suffer. Millions of people do suffer from it though, but are so unwilling to speak out that their voices are never heard. As a result people never truly understand what it's like to suffer with herpes. It is our duty to help the FDA, NIH, and the CDC understand how much this disease has impacted our lives. How much longer are we going to wait and let life pass us by? No one is going to save us. We have to save ourselves. What really gets me? A lot of people with herpes are suffering every single day, but they aren't willing to do anything about it. People suffering with herpes have given up on asking for help because of concerns about stigma surrounding the disease. How much longer will we wait and hope for someone else to change our lives? If we aren't willing to advocate for change - we are just sitting ducks waiting for something that may never come. So... Sign this petition for yourself. Sign this petition for everyone else suffering from herpes Sign this petition for the hundreds of millions with herpes who are at greater risk for contracting HIV - and for the ones who contracted HIV not realizing there was that increased risk (and didn't even know they had HSV because routine testing is not recommended) Sign this petition for the babies who contract neonatal herpes (which can be fatal) and their parents who have a broken heart seeing their newborn covered in lesions and deathly ill - and for the babies who have passed Sign this petition for the people who can go blind because of herpes - and for the ones who have gone blind Sign this petition for the people who get herpes encephalitis - which is fatal - and many of which if they do survive will never recover neurological function - and for those who have lost their lives due to herpes encephalitis Sign this petition to protect your loved ones from contracting herpes - because a prophylactic vaccine would be important and a therapeutic vaccine would help decrease transmission. New medications would help decrease breakouts and transmission Sign this petition for all of the people who still get breakouts all the time despite high doses of medication and are risking damaging their other organs just to go one day without pain or discomfort Sign this petition so people can go one day without thinking about herpes Sign this petition so people don't have to worry about transmitting this disease Sign this petition to make everyone's lives better (whether they have herpes or not (because as it stands - everyone is at risk ) Sign this petition because the very act of kissing someone you love can bring that person lifelong pain and suffering Sign this petition so you can disclose and say - but I don't shed the virus anymore and there's almost 0 chance I can transmit this to you Sign this petition for better research, better testing, more awareness, more funding, more treatments, and less stigma Sign this petition to change this world https://www.change.org/p/please-read-this-if-you-suffer-from-herpes-or-know-someone-who-does Because research and funding is so limited, it may take years upon years for patients to have access to treatments and there is no guarantee for something new to hit the market. The last time a non-topic agent was FDA approved for herpes was in the mid 1990s. The aim of this petition is to increase awareness and funding so that patients can have access to medications sooner. Many people with herpes see this daunting road ahead without new treatments and are willing to consider experimental therapies (that have not always been tested on animals) because they have uncontrollable outbreaks and pain. This is not safe. This is not necessary. People should not feel like they have no options. This petition is being sent to the FDA and CDC (trying to find the NIH point person). It IS being sent to the house of representatives and the senate. It is being sent to politicians all over America. Every company, researcher, and scientist working on HSV will take notice if we get enough signatures. There's hundreds of millions with HSV-2. There's a few billion with HSV-1. That's a lot of people being impacted by herpes. We need more than 102 signatures to make a chance. Sign and share. Tell a friend, co-worker, family member. Share on another forum. Share on FB. Share on twitter or reddit. Share with your support group in person. We are NOT asking for money. We ARE asking for you to sign the petition (with whatever name you deem appropriate) and whatever e-mail you'd prefer. If you comment (and explain reasoning for signing) on the petition, your name is revealed. However, you CAN sign (with no comment) and your details cannot be seen by the creators of the petition or by anyone else who signs. Comments would be helpful though to help people understand how many people are suffering. https://www.change.org/p/please-read-this-if-you-suffer-from-herpes-or-know-someone-who-does What did I miss? How has this disease impacted you? Why is change important to you? Please sign. Share your thoughts.
  12. Hi everyone, I've had HSV2 for over a year and known about it for six months but it's my first time posting online here. I live in the UK and have done a lot of research on herpes simplex, talked to the helpline staff at the Herpes Virus Association and recently attended a talk from a UK county head of sexual health who is an expert on herpes simplex. I have always struggled with the stigma element of the virus but I have become a bit obsessed with reading up on what people who don't have it (or think they don't) think about the virus. I have found the amount of online abuse about people with genital HSV1 and HSV2 (particularly the latter), and the virus in general, absolutely staggering and overwhelming, even from those who appear fairly well informed about what herpes simplex is and what it does. Nobody is going to dispute that HSV2 prefers the genital region and that it is more likely to reoccur than genital HSV1, but I'm finding it hard to work out why it has been labelled the demon of the two types for any other reason than pharmaceutical propaganda. I specifically asked the expert at the talk I went to whether there was any clinical evidence to support the theory that, location aside, HSV2 was more potent than HSV1 and he said there wasn't and that HSV2 is 'no worse' than HSV1, I'm also frustrated with how the NHS seems to deal with it. I recently read their information about cold sores and genital herpes online and felt compelled to email then to inform them some of their information was incorrect. The biggest issue was that they said HSV2 caused genital herpes. I said this should be changed to acknowledge that HSV1 is now responsible for more than half of all genital infections in the UK. To their credit, they did this straight away and have changed all of their info pages to say that cold sores and genital herpes are caused by herpes simplex and that there are two types, rather than assigning the types to parts of the body. They still haven’t updated their cold sore pages to mention the risk of genital transmission though, amongst other outstanding updates. I would like to know how other people have moved forward from the stigma. I guess not reading vile comments from uneducated people online would be a good start!
  13. I was sitting for an event when a friend in front of me stole a bit of food from the guy next to her. In order to prevent her from eating it, he sarcastically threw out there "I have herpes!" now, what he meant was that he has oral herpes obviously (even though he probably doesn't), but is this a step in the right direction against the stigma? He didn't jokingly saw "he has cold sores," he identified them as herpes. Also, the girl didn't reject the food itself like it was him saying the food was dirty. Yes, it still was the butt of a joke, but still interesting perception. Thoughts?
  14. I didn't see it posted elsewhere so I thought I should share. A good article from a contributor at the Chicago Tribune that discusses public disclosure, the stigma, and staying above the noise when it comes to HSV and STIs. http://www.chicagotribune.com/lifestyles/health/ct-i-have-herpes-health-essay-0505-20160505-story.html
  15. I created a mock Pof (plenty of fish) account. Uploaded a non facial shot of myself and a much rather big spiel about HSV and how the stigma is far worse than the actual condition. Wow!! Talk about ignorance! I had a few "ladies" message me and tell me to use an STD dating site. I replied with polite messages reminding them that standard STD blood tests DO NOT screen for herpes! And the figures (Australian figures - which aren't as high as our USA allies). A few ladies replied positively. Mostly nurses, funny enough? The others were mothers. Type I was the bigger type admitted. One woman - who I added on Facebook had my type (II) and we shared stories and it was nice to talk to someone that knew the psychological head f**k that is herpes. The point of this post!!! WTF!!!!!! (I screamed the actual words of that abbreviation) Why isn't this s**t being taught in sex ed to teenagers? Because it has no physical/sexual/fertility effects... It's ignored! The government is spending thousands on mental health campaigns and bringing it "out of the shadows!" What do you think this herpes diagnosis has done to me!! I already had depression! Now it's worse! I feel like writing a letter to our state health minister and see what response I get. I'll add my proper name and everything. I feel my days of having someone to hug and hold who I love are now gone! But if I can reduce the stigma of this BS "skin condition" so others don't have to suffer like I have... It will be a small price to pay..,
  16. Hi, I acquired the genital herpes virus 2 years ago and have been devastated ever since then. I am a very reserved person, I only engage in sexual activities with guys that I have been with in a long term relationship. I have not had many sexual encounters. I have always tried to be safe because I always feared STDs such as chlamydia, gonorrhea but genital herpes never crossed my mind. I have been raised in a very traditional latino culture with a lot of emphasis on catholicism, sins, punishment for your sins, etc. My mom has the herpes virus that is on the lips, ever since I can remember. I obtained the same lip herpes virus when I was in my early teen years, my guess is mostly from mom than anywhere else. Cold sores were not all that often, for many years I did not have an outbreak, until I started college and then they were too often. I learned the tricks of putting ice on the sores, keeping it dry, avoid bathing with steaming water, etc and I always had a abreva at hand just in case. I have never given my cold sores to anybody. 2 years ago I started seeing one of my older sister's friends. I was surprised and flattered the guy had apparently had a crush on me for many years. I thought, what more reliable person than someone who has liked me for all this time and that is well known to my family. My sister was against the relationship from the get go, she's not all that good at sharing and often called him a traitor and afterwards she stopped taking to him, she has done this type of pattern before, not that I had ever dated one of her friends but I became friend with her friends or even by just having a quick hi and bye conversation with them. I also knew for a fact that she did not like him at all in a romantic way, because of this and her history of jealousy, I did not worry much about her reaction. She began saying that he was sneaky and I began to worry and questioned him about this and what she meant by that and he knew all the right answers and how to calm my anxieties. For the first part of the relationship, he lived and worked 5 hours away and we could only see each other on the weekends. We began being intimate on September, never an issue. One day in December, he got creative and took me to a spa with private rooms and hot tubs in them. I had just gotten over a cold sore and my lips were still a bit bright. He was very passionate and no matter how much I warned him, he said "it was no big deal and that because he could not see a cold sore, it would not be a problem". This guy was definitely far more sexually experienced than me and knew all the tricks on how to make me melt. That day, because I was very self conscious about the cold sore, I did not let him kiss me much, so he focused on oral sex and I can't complain, he definitely knew perfectly what to do and how to do it. The next day I had 4 white spots, pimple looking, around the labia, one on the very top, closer to the belly button rather than the labia, one on each side of the labia and one almost to the bottom of it, but closer to the leg. I did not feel itchy at all, so herpes never crossed my mind. My skin has ALWAYS been very sensitive and because of this I thought it was some type of mold that developed from the hot water at the tub from last night. I called him immediately, he avoided me a bit and sort of brushed me off as paranoid. I went to the doctor myself, he looked at it and said HERPES. I was devastated but decided to get a second opinion, what better place than Planned Parenthood, once again, the NP looked at it and said herpes and gave me a prescription for Acyclovir. I cried for days, felt my life was over and completely blamed it on him, because my sister had been telling me he had been seeing other people at the same time as he was seeing me. He went out a lot without me, he used to say he was hanging out with the guys but after this I began to wonder if it was really the guys or if my sister was right. I broke up with him after I told him he ruined my life, I refused to answer to his calls, emails, texts. He never really appeared all that bothered with the diagnosis and he had sores worse than mine, his response was "well, I don't deal with stressful situations like you. If I have it, then I know it won't go away and I just deal with it" . After me avoiding him for 2 weeks, he then offered to go to Planned Parenthood with me and have a talk with the clinician. We saw the NP and I explained how I broke up with him because he gave me herpes, he tried to get the NP on his side and said he had never had herpes prior to me. The NP asked if either one of us had cold sores and I said yes and she said that I could have given him cold sores and he could have given the virus back to me through oral sex. Thing is, he never had a cold sore on the mouth. Regardless, I still devastated and he said " well, see? it was your fault and I'm not blaming you or breaking up with you. Who else would understand you more than me now?" After some convincing, I agreed to get back together with him. We moved in together and he began disappearing again. We finally broke up after I got hospitalized for 3 days with hypertension and pneumonia and he rented a boat and partied all those days. After the brake up I was devastated, not because of the breakup or aching for his love, but because as he said it many times "who else will understand you better than me, we both have it..." My dating life was OVER. He instead began dating a few months after and even got the girl pregnant. I felt too self conscious and did not want to pass along the virus, I felt like the extremely contagious person that could not even engage in flirting, as if a simple smile from me to someone would make him sick. I am on top of this as much as I can, take acyclovir tabs as prescribed, on a daily basis, added Lysine, take centrum and even the new vitamins for nails, hair and skin. I have abreva, acyclovir and camphophynic topical creams at hand. 2 years later after being diagnosed, I met the most wonderful man I have ever met. I seriously cannot think of any complains to make about him. We have been together for 8 months now and he talks more and more about a future together, about having children, a house together, etc There is nothing I want more than this. I can see and dream about a future with him. We have opposite and hectic schedules, reason why we really have not had sex. We kissed passionately, have engaged in oral sex and I almost always make an excuse to stop it right there. It is important to note that ever since genital herpes began, my mouth cold sore are not as often as before. Anyway, I love this guy, I truly do and do not want him to be sick. Last week, we actually had sex. I had not had an outbreak for months, we used a condom and he really enjoyed it, I was too self conscious and could not help myself but thinking the worse, I was so anxious during sex that right then and there I felt as if I was itchy and stopped sex at that moment. Soon after sex the itchy feeling stopped, my doctor says I'm so paranoid that it is more a tactile hallucination than an actual outbreak. My amazing boyfriend has been talking about moving in together soon and I have avoided the topic, not because I don't want to live with him, but because I fear that being so close to one another would be hard to come with a daily excuse not to have sex. I fear that if I tell him he would not see me as the girl he loves anymore, but as this monster with cooties. I have even thought that to avoid this, perhaps I should break up with him and hope he finds someone else herpes free. But I LOVE HIM and have not done neither. I do want a life with him, I day dream with his talks about wanting to grow old with me. I want this, I really want this. But... do I deserve it? Does someone like me, with herpes, deserve this dream? To this day, I still do not know if I was the actual cause my ex and I got herpes or if it was him. I was always intrigued by his "not big deal" response, I asked him if he cheated on me, he stayed quiet... I asked him again after we broke up, his response "what does it matter now". I do guilt trip myself that regardless of how I obtained this horrible virus, perhaps it was well deserved for dating my ex against my sister's consent or for something else. Paying for my sins? I can name my sexual partners, or exes with one hand, but I cannot stop feeling as the loose dirty girl. I know of people that have multiple partners in a month and have not had my luck. I feared other STDs, but I would much rather have chlamydia or gonorrhea than herpes
  17. I was diagnosed 2 years ago during my last relationship. To my luck I have always been very careful and not that quick to jump into sex, unless I am in a committed long term relationship. Sadly, my ex apparently did not share my thoughts and I'm almost sure cheated on me and that's how I ended up with the virus. I stigmatized myself, felt dirty and my dream of getting married and having a family or ever engaging in sex again, was more distant than ever before. How could I even dare to dream of this or try to get this when now I feel like the monster with cooties? I met a guy now who no matter how much I tried to avoid, was persistent and I can't deny that I really like him, A LOT. How can I tell him? What do I tell him? When do I tell him? He has seen me and is aware that I get cold sores and he did not care. I have tried to tell him in different occasions but he tells me " I don't want to know your past, I know if you had something you would have taken care of it" I still want to tell him because regardless of this being past of my past, it is unfortunately still in my present and sadly will be part of my future too I just don't know how to tell him, what to tell him, when to tell him. I feel like the monster with cooties, how would he see me? I find myself hoping he also has the virus from a previous relationship, just so I have a better chance of not being rejected or ashamed, but realize this is just wishful thinking and might not be the case Is it better to continue to be single and miserable because I have the virus? Or risk the rejection and heartache?
  18. Hsv in the news/courts! Article and lawsuit are not accurate as we know about vag deliveries. But the stigma stuff is dead on . I don't blame her for trying,. http://jezebel.com/a-michigan-woman-is-suing-an-unnamed-celebrity-for-alle-1745711036?utm_campaign=socialflow_jezebel_facebook&utm_source=jezebel_facebook&utm_medium=socialflow
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