I Need Advice (telling others about my HSV) and living with myself...

8/15/09 11:38am

I just read your post and saw nobody commented. I'm pretty much just looking for someone else with herpes to talk to. I feel absolutely distraught. Just thought I'd say hi, and that you are not alone. I was diagnosed with genital herpes this week...

Anonymous

8/16/09 4:37am

I'm on the same boat, I just found out yesterday. What gets me even more is that 3 weeks ago I was tested and it was negative, then I got an infection after 6 months of not having sex, they tested me again and it was positive. I just started seeing a new guy so now he's freaking out, assuming he has it now, and isn't sure what he wants to do in terms of me. I'm pretty sure he's going to run cuz no one wants to deal with this if they don't have to. I feel disgusting, who's going to want a woman with an uncurable disease that can be passed along without even knowing it. I feel like I'm going to be alone forever now because of this. I just want to know how people live with this and if they can be loved by someone again.

hope4future

8/16/09 11:21pm

That's what I'm looking for as well. I don't know how we could talk more about it, I could give you a facebook link or myspace or something? Do you think that's safe on this website? If not maybe create an AIM account so its easier to write back and forth. I do need support and to just share stories and thoughts about my future with somone else who truely knows what its like. I have noticed it feels really good to help others in our situation as well, so hopefully you can have this same feeling. Let me know what you think...

Anonymous

9/12/09 5:06pm

I was diagnosed about 8 years ago. I have dated a few people and was honest. They accepted it but the realtionships ended for other reasons So I am dating again. In April I told a man I was dating about it he was like ok. Then he decided to end the relationship. There are other things he didnt like also. So I recently started dating a man. We have dated for 7 weeks and I knew I had to tell him, so I did. His reaction was this is pretty heavy, I have to think about it. He said he really liked me and he wanted to give it a try. Tonight we were to spend the night together. We went to see a movie and before the movie started I told him I think I had a breakout(should of told him after the movie). He said what a buzz kill and shut down. I asked him if everything was ok and he would not answer me. I said am I still staying the night and he wouldnt answer. I was hurt and of course crying. I told him I was leaving and he let me go. I like him so much I could of seen a future with him. So of course I left him a message asking if it was over. He is probably still at the movies but I dont know if he will call. I like what someone said the disease does not define me. I do to feel like I am going to be alone for the rest of my life. I am so scared to tell someone because I know it will be over. I try to be honest and I get screwed. I realy am hurting so much.

hope4future

9/14/09 9:00pm

This makes me so sad to hear :( I haven't had to tell anyone about mine yet. Its only been 3 months since I was diagnosed and I haven't met any guys worthy of even trying a relationship with. I think I am only getting thru it bc I still see my ex-boyfriend. He knows about it of course, and still has protected sex with me so I don't have to go looking for anybody anytime soon but I know eventually I will want to move on and have another meaningful relationship.

I am so sorry that in your experience guys have been less than willing to accept this as a tiny part of your life and instead label this as 'what you are'. That is my worst fear...that I will fall for a guy and when I decide to finally tell him, he will shut down and then shut me out.

All I can say for both of our sakes is that we just haven't met the right person yet. Someone does exist out there for the both of us, I know it in my heart. There will be someone you completely fall in love with that will overlook what you have and will accept you for everything you are. Its so hard for us to keep our hopes up, but when we do find someone it will be SO worth all the hard times. Keep your head up and I will try to do the same!

marlalovestoshop

8/17/09 2:04am

Hi welcome to the party. One out of five in the US now has herpes so your definately not alone. I would recommend you get on valtrex, county hospital is the cheapest or just go to the doctor, but do get the valtrex it will help you deal with it and cuts down on the number of out breaks. You can go for years no out breaks then boom you get stressed out and it happens. Unfortunately no cure though do some lysine pills and herbs it seems to help. 1 is not as bad as 2 in the herpes strains, but know that with herpes it is best to cope with it on meds and know it will not kill you, you just feel like it will at first when the outbreaks are bad. Take a antidepressant and be possitive like I said lots, lots of people have it. There is a shot they give to people who do not have 1 or 2 and guess what it works they cant catch it yeah...but nothing for us who have it yet.

Electro

8/25/09 4:58pm

i feel the exact same way. i still cannot believe i have this. i could have settled for any curable infection but i cant handle knowing that fact that i have a disease that will never ever be cured. i was infected about 2 months ago also. i made two doctor visits that month. the first week i was clean, i was just woried about a little shaving bumps which i thought was herpes. had sex with a sexual partner. had an outbreak then went to back to the same doctor and i was told im tested positive. this is extremely hard to go at this alone. i only told my closest sister. and i told my past boyfriend. (we remained best friends after a past breakup) and he is honestly being there for me.although i was still single when i had sex with the guy that gave it to me he is still hurt but still there for me. the day i told him whats wrong with me and why i couldnt have sex with him, he hugged me and i cried in his arms after he said its okay we;ll just find another method of having sex. use toys until we're ready. i just feel so inhuman. i feel worse than an animal. sex is between someone you love and a great part of a relationship but i feel as though that part has been taken away. to feel that special bond of sex without having worries if your going to infect the person you love. . i am extremely depressed right now. i told him everything i know about staying safe if we did decide to have sex but i told him to not just go by my word but to look it up for himself to. we are still in love with eachother but im scared because of this things will never be the same. so anyways i decided to stop crying in my bed today and join this site. i really need the support. i cant hold this inside anymore. its to the point where i dont want to go on with life. i hate the fact that the last person i had sex with is the one that ruined my entire life.

hope4future

8/26/09 6:25pm

You said it exactly as I think it. I miss the special bond I had with my ex-boyfriend. He is there for me and although we are not together we hang out all the time and continue to have sex. He obviously knows about my HSV and requests that we use condoms all the time and it's just not the same. We refrain from sexual contact if I have any symptom of a breakout but he is surprisingly not afraid to do oral if I am clear. He has since been tested and came back negative. I think using condoms when no symptoms of a breakout will be able to work for us, so I am at least grateful for that. I want to let you know my Dr. informed me that one out of three people have built up an immunity to catching this disease so it is hopeful that your future sexual partner could be one. Of course you should not bet on it and always be careful and let your partner know your situation before having sex. I could not imagine how I would feel if I did pass this disease to anyone else so being honest is the only thing I can do now. I haven't had to tell a guy that I am interested in starting a relationship with, so this is what i am dreading and so worried that he will not want me anymore. I guess that's why i keep seeing my ex... I know he accepts me and I don't have to worry about him not wanting me because of it.

Electro

8/29/09 12:37am

Yeah thats exactly how i feel. Me and my boyfriend had a talk the other night. he told me he finally got to finish reading an article about gential herpes and how to keep safe. he told me he wants to have sex with me. But when he told me I told him that I honestly dont feel like im ready. He told me he thinks during the whole time of us having sex he would be worried about catching it and it would be hard for us to relax. Is that how you and your partner felt before have sex the first time while you had the virus? How often do you guys have sex, a lot? Im very sorry if that was too much of a personal question but I just need to talk to people who are having sex with H. I will feel extremly horrible if I pass this on to him. He has been there for me through the times when he should have left. I feel very honered for him to want to stay in my life AND still have sex with me knowing its possible he could get it to :(

And another question how are you for sure it's safe to have sex when you have no signs of any outbreaks? And what are the symptoms of having a pre-outbreak (or whatever its called) Would the symptoms be clear as ice before engaging in sex?

Thank You...

hope4future

8/29/09 9:58pm

I know exactly what you mean, don't even worry about it I am very open about any questions people have bc I just want to try to help anyone else that has gone through what I have had to go through.

Well my ex and I did have sex pretty soon after we found out that I had it. Maybe 3 weeks after my first outbreak we did, and honestly he isnt scared for some reason. I let him know how it can be transfered and I think as long as there are no symptoms of a breakout or near breakout and you use condoms every time, then you should both be okay. Although this has been true for me, everyone is different. If your bf is well informed then yall should try when you are completely clear and I think after the first couple of times, the fear of possibly passing it on will hopefully begin to fade.

As far as outbreaks go, I do know there are a few signs that will let you know you might possibly have one soon. Some people will feel a slight burning or itching discomfort in the area and may have physical body aches. I have noticed these things a couple times, but they never directly developed into anything. During this time however I did not have sex bc this is considered to be a 'shedding stage'. My body was trying to shed the virus so even though I did not have a breakout, I was still highly likely to pass HSV on at this time. I have had only one 'outbreak' in the past 2 months but you really have to be careful bc my ex bf was actually the one to notice it, not me. I had one bump and never developed any more. I never had any of the pre-symptoms and when I found it I made sure to constantly wash my hands throughout the day and of course after using the restroom and it soon healed on its own. I do not take any medications, although if I had insurance at this time I would bc it is a great way to prevent outbreaks from ever forming. This might help your bf to feel more comfortable if he knew you were on daily preventative meds.

I hope this helped you out a little bit. Please do not feel disgusting. I have only had this for a little over 2 months now and was completely depressed in the beginning, but I am already noticing that life goes on, and you could be MUCH worse off than the situation you are currently in. Just keep your head up and know it isn't the end of the world even if it seems that way for days or even weeks at a time.

Electro

8/30/09 4:13pm

Awwwww!!!!!!!!! thank you soooo so much!

you made me smile after reading the end. Yeah its been about the same time as you since ive had H. i think im getting to the point where im accepting it. and yeah i do see it as it could be something much worse. I will be more careful and take notice of any bumps i have. Honestly im sort of getting use to it. i research about Herpes pretty much every day. and honestly i believe the media DOES make it out worse than it really is. and i think thats why i was extremely depressed.. But in all realization...its a virus thats not going to kill me, and not keep me from doing daily activities, walking, talking, or pretty much disable me. And there are sooo many virus' out there that cause outbreaks and affects the immune system. i dont know i might be so positive today because im having a good day...but anywho just thought id share some thoughts. thank you again..

MbMmami

8/25/09 5:41pm

I have had it for almost two years now...it is the hardest thing possible to deal with...i even gave it to my bf and we have been together a year...i also do not have health insurance....so i stopped taking my medicine a long time ago...i dont get any outbreaks anymore, but he gets them all the time..i feel so bad its like all i do is cry, i know he hates me sometimes and that makes it worse...depression s a constant, and sometimes i feel like whats th point of living, but we have to keep our heads up, becaus all we can do is live with it, and try to move on...jus use condoms, and if u feel urself getting serious just tell thm the truth..i still havent found any cheap medicin tho.

Sailor27

8/28/09 12:14am

Hi I know exactly what you are going through. I was diagnosed when I was 24. I am 27 now. The first year was the worst. Your body is taking a hit both mentally and physically.

I was misdiagnosed several times as having yeast and bacterial infections till it got so bad I couldn't sit and could barely walk without tears. I had all the mono symptoms of being exhausted, nasous, pain shooting down my legs. The guy who I got it from completely shunned me. I felt like the world was crashing in around me. I ended up going on anti depresents and anxiety meds. (Big Mistake!)

Finally I got the nerve to tell my best friend. It was like a weight lifted off me when she didnt send me to a leper colony :) Then as I told more friends and opened up I felt better each time. I eventually got the nerve up to tell my mom. You know what... turns out my mom actually had it to! She got it shortly before I did. Her boyfriend didn't know he had it. They are still together and very much in love. As I told people I found out I knew more and more people who had it.

Next came dating. Yes DATING. I took it as a blessing of sorts. It got me to slow down and get to know a guy before jumping in bed. If I guy didn't want to wait then he wasn't worth it. The first time you tell someone is the hardest. Just make sure its not when things are already sexually heated. You want them to make the right decision for them and you. Make sure you can answer any questions that they might have. Stress that its not as big a deal as the internet and media make it out to be. The pics online are extreme cases. Stay calm and be honest. Its scarey but the honesty is appreciated. Truthfully, I have only had one negative reaction however it was wks later when the guy started dating someone else and freaked. He got tested and later apologised for his behavior. For the most part guys understand especially if you give them they chance to know you first.

As for medications. I suggest taking acyclovair daily supressive therapy. If you don't have insurance and can get a script through say planned parenthood or a doctor Kroger pharmacy and Meijer will fill it for $4 /30day supply $10 90/day supply. Also make sure to get in tune with your body. If you start feeling run down and unusually tired. get some rest ASAP! chill for a few days. Your body is telling you something. Or if you start getting tingling in legs, rectum, labia or pains in legs thats another sign. Exercise and Healthy eating is also important. Nuts/peanut butter is a trigger for a lot of people. For me if I eat a lot of sugar or chocolate. Cafiene in excess as well. You'll learn what works and doesnt Best of Luck. Don't let this ruin your life.

Sam

8/28/09 9:59pm

I was diagnosed a year ago. My body is going through not just herpes, but post herpetic neuralgia. A chronic pain caused by inflammed nerves in my vagina and sacrum (rectum) due to herpes outbrakes. By the way, even after outbrakes are healed, my nerves are inflammed and the pain remains until the next outbrake, when I go through the same cycle again. I am 35 therefore my outbrakes come right before my period. I have tried valtrex, lysine, chinese viral herbs ( they made my outbrakes less severe) accupuncture for 6 months, twice a week, they reduced my pain, but only temporarely because herpes its in the central nervious system and acts out in the sacrum , the same nerves that accupuncture relaxes , it first stimulates which is like a catch 22. It worked to diminish my pain but only temporarely (It also left me bankrupt). I have currently changed my diet. I eat high foods in lysine, such as fish, eggs, potatoes, organic meats, beets, plain yogurt, whole wheat bread only, honey, herbal tea, lots of vegetables and I eat fruits. I avoid all nuts, seeds, multigrain, white rice, processed foods, sugars, coffee with caffeine or even decaf, green tea, black tea, chocolate. I am currently in the process of starting a new homeopathic holistic treatment with Herbalist Christopher Scipio. He has two herpes clinics in Canada. He will be sending me my herbs and remedies by mail as I live on the East coast. He has told me I must do Hatha yoga 5 times a week ( The best advice anybody has ever given me to keep herpes at bay because it reduces stress and trains your body to be relaxed, even when you are under stressful conditions), and took me off all of the chemical meds I was on. I was on Lyrica for neuropathy or post herpetic neuralgia pain, I was putting steroid creams and he took me off of that. He said they make my neuralgia worse and the relief its only temporary. He is a very positive person and has given me strength and encouragement and has reminded me that I am just as clean and beautiful as I was before. I learned all of this after I read his book call "Making peace with Herpes" by Christopher Scipio. He is one of the most experienced herbalists in the homeopathic herpes world. I am truly grateful to have come across Mr. Scipio, that its why I want to share this with you. Oh I almost forgot to mention, that I take daily supplements of zinc and selenium, super B for stress which has all of the b vitamines, and also vitamin C comes in the super B supplement. I take calcium and magnesium, acidophillus ( as I used to suffered from yeast infections too). I have been doing yoga 5 days a week and my pain its becoming more bareable. My friends and family are there to support me. I have been honest with them from the very beginning. I hope many people read my post because I want to be able to help as many people as I possibly can with my story. I went from never experiencing pain in my life, and not even taking an aspirine, to a condition of chronic pain at 34 years of age. I suspect now that I had it since I was 33 because my body began having constant yeast infections back to back for a whole year prior to my herpes diagnosis. It does not matter how bad somebody's situation is, there is always somebody who has it worst than us.

Leasha

9/ 3/09 7:19pm

I am crying right now because i know exactly what your going through. i have had genital herpes for three years and everything you wrote in your statement i think about all the time. First, I want to tell you to not be afraid. There will be times where u meet someone you really like and hey, you could even see yourself falling in love with them, but they are not ready to accept being in a relationship with someone who has herpes. To them its almost like aids (if their not educated on the subject) you have to build up trust with the person and get to know how they really are, and for them to know you... build a mutual respect for one another. [i wouldn't advise telling someone on the first date what you have...lol. its not their business at that time]

i know its all very scary, especially if your the only one you know who has it. and be careful who you tell because i got it in highschool and i put my trust in the wrong people, people who i had even come to trust.

i am most certainly not saying that everyone is out to get you, but there are people who have their own self interest in mind and dont care what happens if your personal stuff gets laid out.

as far as meds, i take acyclovir by prescription at kaiser, im not sure of any otc drugs. but herpes outbreaks can be triggered by many things: stress, weather (season), caffein even....

depending on where you live there may be support groups for you to talk in person with people or like this on the internet is cool too, but i feel that true and good conversations happen when u talk face-to-face, but that is completely up to you and how comfortable u are talking to others about it. (there are depression groups, counseling too)

whenever it came to talking to a guy, i am still scared of what he may think.

literally two weeks ago i broke up with a guy (well it was mutual) but anyways i told him what i had and he wasn't ready to have a relationship with someone "like that". i told him sex isnt everything in a relationship, but it can play a huge role in intimacy. me and him are still friends so theres always that.

but my advice/opinion is to love yourself first before you allow anybody to love you, and my ex of 2 years knew what i had, we had unprotected sex countless times, and ya know what, he never showed signs or broke out because [ i never had sex with him while i broke out, which greatly reduces the chance of transmission]

i hope that my story helped u in some way. and ya know, theres hope for anybody, and while your alive, fuck all the people who dont like you or are ignorant, just live your life, live your dreams, and youll find your partner on the road of your life (if that makes sense =])

take care,

leasha

hope4future

9/ 8/09 9:36pm

Awww! Thank you so much for that! I really have had many more positive days lately than negative ones so that's been good... But I still have those times when I just don't see any guy I would want to ever want me in return knowing what I have. Your words just helped me realize that if they are unaccepting of me bc of this disease, then they aren't somebody I would want to be with anyway. Do you go to support groups face-to-face regularly? I think that might be something that could tremendously help me (and many others) as well.

Leasha

9/ 9/09 1:14am

No, not yet. I actually came across this website in my search of a good counseling place. In my area, there are counseling for depression (which i have) but i did not find amy particular STD group therapy, but they did have people that would talk to you about what it does.. which pissed me off because if someone is reaching out for help and the problem is common, then why make it so difficult to find what they need... maybe i should start my own lol but seriously if you hear of any group thereapies let me know. i think the depression/anxiety one would help people with herpes, but it might be awkward if their the only one in the group that has it, ya know what i mean... so i dont know im still looking.... ugh!!! but yea if your looking to date theres a website called MPwH.com (meet people with herpes) and its pretty cool.

im very glad to hear that i helped you, i hate feeling sad and depressed, but the best way to deal with a problem is talking, thats why i was desperatley searching the internet for anything. but yea i know exaclty what you mean in the relationship area. i made many mistakes in the past, but just because you or me or anyone has herpes doesnt make us bad people. i had to realize that because i too felt disgusting and i didnt feel worthy of anyones time. yea there will be assholes out there that get scared and run away, but you can oercome and meet a loving individual that might even say "baby, give me what you got!!" =] that would be..wow. but in the meantime we gotta play our cards right, be cautious of who you tell, and stay strong if people are prejudice.

ppmmbh

9/12/09 12:56am

I feel like everyone on here has been inside my head or reading my journal for the past month! It is very comforting to know that I am not the only one having these thoughts, fears, questions, and depression. I try everday to belive that I can live a happy normal lifestyle and a happy normal sex life at that! I've been with my partner for 2 years and the week we found out of the most emotional and difficut of our relationship... but we have come out of it stronger and closer to one another. The next hurdle for me is having sex again. I really sympathized with someone on here who was saying how she wasn't sure she could feel sexy again, or be comfortable having sex without freaking out about transmitting it to her partner. I too have done WAY too much research on the subject and have turned into a bit of a hypocondriac because of it. I don't know if I could handle knowing I gave the person I love something that has cuased me so much pain and suffering. I need to chill out! But how? does acceptance come with time? How does one become comfortable with their bodies again after knowing this virus is inside them? The ironic thing, I work at Planned Parenthood and even in that environment I don't feel comfortable to have people know I have HSV. AND WE TREAT IT ALL THE TIME!

hope4future

9/14/09 9:37pm

I was very scared about passing this to my ex-boyfriend whom I am still talking to (although I know we will never be back together... its mainly for comfort). We are again sexually active and of course he is aware of my HSV.

I was in your same shoes and just did not feel attractive any longer and was extremely worried about giving this disease to him. We have had to change a few aspects of our sex lives of course, but I have found that we can both still be completely satisfied.

We use condoms EVERY time we have sex. Yes, I know this is not ideal, but its something you definitely will have to start doing. He will still go down on me, but only if there is no sign of a breakout. He is okay with me doing the same to him at any time bc I have never had anything on my mouth. I would very much reccommend getting on a daily preventative med (acyclovir) to prevent outbreaks from ever occuring. THis lessens the chance of you passing it on by over 90% according to my Dr. I would be on these meds if I currently had insurance. (BTW you mentioned you worked at Planned Parenthood... is there any plan they have to help out with the cost of perscriptions?)

So recently my ex was tested to see if he had HSV. After all of our sexual contact he came back negative. I just hope this shows you that although it CAN be easily spread, if you take the proper precautions, it is very likely you will never give it to your partner. I hope you can soon be intimate again, I know its a huge part of a relationship and please don't ever feel gross or that you are not sexy! This is just an annoying new part of your life that you will have to deal with, it does not make you the person you are. Best of luck

Anonymous

9/30/09 9:12pm

you abstain for a while. in my opinion the responsibility is not to pass it to another individual. but people don't do that hence your infection and mine. if infected people behave more responsibly we may have less infections. so ya sit here an wonder if you're ever gonna be intimate again. i tried to join an std dating group today but the catch is you have to upgrade to gold member status in order to talk to anyone and that costs money. i was depressed too.... for a long time. and i was angry. ya just move forward.

hope4future

3/19/10 5:03pm

Seven months ago I first posted my questions and concerns about dating and continuing living my new life with herpes. At that time, I had recently been diagnosed and was literally at the lowest point I've ever been in. I used this forum as a means of self-healing; it definitely helped reading stories from people who were in my same boat and also from those that had been dealing with HSV2 for a number of years. I just wanted to write again in hopes of encouraging those out there who are now in the shoes I was in nine months ago. Life does go on! I used to constantly think about how 'disgusting' I was and how I wished I could just be back to my normal self. Every day I was depressed and I had little hope for another meaningful relationship in my future. I am SO happy to say that i no longer have these warped negative self-images just because of this small change in my life. I am in a great relationship with a guy who accepts me for all of me and ACCEPTED me in spite of my situation. I just want to let others out there know that it is NOT the end of the world. You don't have some horrible incurable disease that threatens your life! Its just a small annoying (and trust me it can be annoying at times) tiny part of life. Having herpes doesn't make you a certain 'type' of person and DEFINITELY doesn't make you any less of a person. It is still possible to find someone out there who will accept you for everything you are, so PLEASE don't give up hope!!

I Need Advice (telling others about my HSV) and living with myself...

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