For those who have read my prior posts, apology for repetition. Let me tell my sad tale of woe. Have had H1 for 5.5 months. Got it orally and genitally at same time from an 'assualt'. I have active outbreaks EVERY SINGLE DAY. I have genital streaks that are white surrounded by very red areas, pimples that come and go, and oral burning and swelling. I have had these areas cultured, so I KNOW they are not something else. I tested IgM + after the first month. I have seen every Dr in the book. I can't take meds - I have allergic rashes. I have started and stopped Valtrex 4 times trying. Even lysine gives me a rash. I eat right, dont drink, dont smoke. The burning in my butt, down my legs and in my privates gets unbearable. I have not have ONE day free from this hell. I have cried day and night since May. One time I cried so hard I puked. I have seen a primary, a gyno, 2 infectious diasease specialists and urologist. Every one told me thatthere is NOTHING they cando but try meds, which i can't tolerate. The 2nd Infec disease doc said "it's not possible to have an active outbreak EVERY SINGLE DAY" He basically called me a liar. I almost dropped my drawers right there to prove a point. What am I going to do? The physical and emotional pain is too much for me to handle, and there are NO signs that this is relenting. Ihave nowhere to turn. There is no cure, no symptom relief, and thus, no hope. Every day I sit and try to figure out how I can just end thepain without hurting my kids. I don't want to be here any more..it hurts way too much. I have no interest in talking toa therapist. He/she is not going to make the severe burning in my butt and genitals go away. I am so angry I could spit nails. I only get one life, and this is the **** I get dealt? I don't see any options left. As I type, the pain down my leg feels like someone has lit me on fire. After 5.5 months, I would rather burn to death from the pain and have it be over with. Whoever said this was just a skin rash hasn't walked in my shoes. Someone..anyone...please help..

Hello,
My name is Heather...first of all I really want to say that I am very sorry that all of this happened to you. I too have HS genital... I don't have any medication advice but I do know that Herpes can cometimes be set on by stress. I used to get outbreaks constantly like you....I haven't had an outbreak for almost three years now. I have recently been TTC for 6 months with no luck and finally the stress got to me and I got my first outbreak in 3 years. I know that it is hard not to think about it but try to relax and try not to think about it and MAYBE things might get a little better. I will be praying for you. Please keep me posted.
:angel:

I agree with Heather..... If I'm stressed - I get an outbreak!
You have every right to be very angry! You have every right to be hurt! When you were assaulted, he took a lot away from you. The way I look at it is (and this is from personal experience) by not going to therapy and getting all this crap out (which in turn is causing you physical and emotional pain) He wins! He has total control of you - STILL. He has destroyed you and is making you suffer every day. You can get up every day and choose to let him win or you can do something about it..... He can get you down for a little while - but can he OWN you?
You can fight back!! You can be a survivor NOT a victim! You have a lot of justifiable anger. Use it! Get better in spite of him! Show him he may have been able to hurt you for a little while but your'e much stronger than that! Are you going to let him take your kids mother! Are you going to let him victimize THEM too?!?!?! No one can replace their mom. You've been through a lot and you need support. Please find someone to talk to. You deserve so much better. Take care of yourself and your babies. God Bless.

The thing you must remember is that you can't do away with yourself and not hurt your kids. Nope. And you would be hurting them for the rest of their lives in the worst way, and they would be much more likely to commit suicide themselves later in life. It's hard not to think of that as an alternative, but you must not; if not for yourself, then for the dire affects it certainly would have on them.

Therapy, for the reasons mentioned above by Jaclynann and raige, would help with the emotional side; the emotional side is huge with herpes. I have had it for about 15 years and can tell you that having a bad argument with my son can bring on an ob when I've been doing everything else right.

As for pain relief, what have you tried from previous suggestions? Does anything (like aloe or garlic oil) help at all, even a little bit?

Also, I had a bacterial vaginal infection that nobody diagnosed for a while and sounds similar to your symptoms, and lasted months. It is possible to have herpes and to have another kind of infection on top of it. How many times have they cultured your symptoms to make sure that herpes is constantly present, and that something else isn't?

Ladies,

Thank you for your posts. My emotional trauma is not just from what has happened, but the fact that I have symptoms every day. They have only bee cultured once, but the symptoms are identical and in the exact same spot. How is it possible to have an oral outbreak every single day? The spot that burns is the one I had cultured - sure enough came back HSV1. The streaks down below will go away only to come back hours later or the next day. I have had a gyn. exam since all of this (I have had several). No infection. Just herpes. I can't live a life as a leper. I was out with some friends last night and my friend said "taste this" and handed me her drink. I declined - she persisted. I finally said I had a sore throat. This is a minor incident, but I can't have any intimate life either. NONE. Can't kiss anyone. Certainly can't let anyone touch me. I can make this sacrifice if I know that this will go away soon, but it shows no sign of stopping. How can a therapist take away my pain and anger if I have lost my intimacy? Isn't that what life is about? Having a connection with someone who is your soulmate? Being able to kiss your kids goodnight? Being able to share a piece of cake in a restaurant for dessert? Not to mention the physical pain. I use peroxide to lessen the burning, but I can't take much orally. I can't accept this hell. It has been almost 6 months, and the fact that it has not gotten any better makes me emotionally WORSE. I don't think I could ever hurt my kids, but why should I have to live in this hell? There has tobe someone else out there that have active OB's every day for at least some extended period of time? Can I really be the only one? Maybe I should play the lottery...

Ladies,

Thank you for your posts. My emotional trauma is not just from what has happened, but the fact that I have symptoms every day. They have only bee cultured once, but the symptoms are identical and in the exact same spot. How is it possible to have an oral outbreak every single day? The spot that burns is the one I had cultured - sure enough came back HSV1. The streaks down below will go away only to come back hours later or the next day. I have had a gyn. exam since all of this (I have had several). No infection. Just herpes. I can't live a life as a leper. I was out with some friends last night and my friend said "taste this" and handed me her drink. I declined - she persisted. I finally said I had a sore throat. This is a minor incident, but I can't have any intimate life either. NONE. Can't kiss anyone. Certainly can't let anyone touch me. I can make this sacrifice if I know that this will go away soon, but it shows no sign of stopping. How can a therapist take away my pain and anger if I have lost my intimacy? Isn't that what life is about? Having a connection with someone who is your soulmate? Being able to kiss your kids goodnight? Being able to share a piece of cake in a restaurant for dessert? Not to mention the physical pain. I use peroxide to lessen the burning, but I can't take much orally. I can't accept this hell. It has been almost 6 months, and the fact that it has not gotten any better makes me emotionally WORSE. I don't think I could ever hurt my kids, but why should I have to live in this hell? There has tobe someone else out there that have active OB's every day for at least some extended period of time? Can I really be the only one? Maybe I should play the lottery...

You might have "nerve damage" from Herpes like me...it seems to happen to a lot of people. Theres a whole thread on it. I get the constant burning...but since I have only genital HSV, I get the burning in my thighs and genital region, to the point where I can't sit down comfortably. Yes, it truly sucks, and its a 24/7 reminder that you have herpes. I don't know why some people get it and others dont...but know that you aren't the only one. I have to resort to using ice and taking painkillers (Xanex) to deal with it...which sucks cause I hate popping pills.

I guess we're just very unlucky. Anyway, search for "nerve damage"...theres been a lot of people complaining about it. But you're right, Herpes is a whole lot more than just a "rash"...unfortuneately, it can cause serious problems in some people...like us. That's the main reason why I'm scared to death of getting intimate with someone else...they could end up with the same problems we're having. Good luck.

Sad,

Have you tried any of the alternative remedies?

Maybe some people who had constant ob's for months at first aren't reading the board right now. I can remember others having a very hard time (but not with all your previous problems added in--which must be one reason why you're taking so long to get a handle on the virus now); I know that recently lifechange said the primary lasted 6 months or more. So don't feel so all alone--others have had it last that long, and have eventually gotten over it.

I wanted to comment on you question about what life is about. I think relationships are very important, but are not what life is about. I think life is about learning who you can be, about trying to be the best you can be, and about handling the ups and down the best way possible. Only when you have grown to be comfortable with yourself, and are working toward your potential, can you share with others who you are. It's wonderful to share, to discover who someone else is, and a relationship is a journey that takes you places you have never been. But I think most relationships end disastrously because one or both partners try to substitute love (or infatuation) for self-esteem and self-direction.

What I'm trying to say (and not doing too well, because my boys and I were out late visiting friends on Halloween!) is that people can and do live very happy lives without a significant other, even as hermits; but I don't believe people can be happy, no matter how many others love them or they love, without the feeling of being comfortable in themselves, and by themselves.

I'm also talking theoretically and generally, and don't mean to imply anything about you in particular--what you said just started me thinking.

Listening to your expressions of pain, my thoughts are: first, when you're in the midst of long-term, constant pain, it's hard to believe it will ever end. But it will. Second, you can continue your relationships for the moment (which is much longer than a moment, I know!) without the touching. I know that's hard, and making excuses like you had to do about the drink is awkward and depressing, but love (the friendship variety or the male-female) does not depend on always having the ability to touch. I say "always" because you can still give your children backrubs, or hold hands, or scratch their scalp, etc, and they can do the same for you. You also can still share who you are with them, or with your friends or a man, in other, non-tactile, ways. And if you recognize that you will recover eventually, no matter how long it takes, then you can share what you are able to right now, while looking forward to the rest later. Maybe much later, but it will come.

Third, I think of how we lose ourselves when we're in pain. My soulmate re-ruptured a disc in his lower back about 9 years ago and had no insurance to pay for an operation, so he had to heal on his own. He was in agony for the first 6 or 7 months, couldn't walk more than a few steps (and he's a backpacker, too), or carry anything. He was never free of pain, even when he took Percocet (don't know the spelling of that), and could never sleep more than an hour at a time. I often woke up to find him missing, and would run downstairs to make sure he was not attempting suicide. I would find him sobbing like a child. We didn't know if his back would heal at all; for a long time he couldn't have sex. It took about a year for him to feel as though it really was beginning to heal, and two years for him to be able to live his life again. Meanwhile, he wasn't doing any personal growth, I promise.

But he did what you need to do. He hung on the best he could. Even though I was there, our relationship went through a very rough time, and I had to accept that he had to face the pain alone--there was nothing I could do to alleviate it, and sometimes I absolutely got in his way--irritated him. What I mean is, sometimes I helped and sometimes I didn't, but he got through it because of himself, not because of me. The love of your children or of others can help you, but as you know, you must face this. You will outlast it. Keep what you can of yourself throughout this terrible time, forgive yourself when you lose sight of who you are, but keep what you can, because you'll go back to it when this is over. It will be over. Hold on.

All my thoughts, hope, and love.

I agree with some of the previous posts. I think you have nerve damage...possibly neuropathy? That can be caused by shingles which is the same virus that causes herpes. Maybe you should try to see a neurologist and treat nerve issues instead of the herpes. I have break-outs OFTEN and was diagnosed May was a year ago. I have one right now because I was intimate last night (my partner has it also). It really does suck but most people that just have herpes don't go through what you're going through. For those of you out there that have suffered nerve damage, do you know how or why? I'm concerned that I might later being that i do have out breaks often. Is that what causes it. I can't take the meds either so I just live with it and deal with the out breaks but I don't want to continue doing that if I could potentially be doing damage. Someone please respond.
SadtobeH+ hang in there. I know it's hard but there is an answer (and it's not the one you've considered!) Try to go the nerve route and keep us posted!

Don't feel that way. I have suffered with it for so long. I have my first OB when I was 15. I spent in paint for almost a year, but then they go away.
Now, I am 42 and only the last year that I got damned obs again; However, in the last 6 months I have not had any OB. I learnt to control it and mad my peace with the virus. I take daily one pill of everClr, two of Oregano and one of Garlic. At the same time, every day, I check my penis with Hydrogen Peroxide to get rid of any possible virus present. Since I started this regime, I have not had the burning, pain in the groins and legs and the itchiness that accomplanied an OB.

I used hydrogen peroxide to make sure I am not having a prodrome stage.
So far the only side effect of using H202 is that my pubic hair is getting blond..(go figure). But it does work. Hang in there and don't give in to the virus. Remember, you are number one.

I used to feel the same way about therapy. I was raped by two men three years ago. The police caught them and they got off with NOTHING because one guy said it was consentual. I was drugged and hardly have any recollection about what they look like, but I remember what happened because I started to come to when they were taking turns ****** me. I had caught herpes from a previous partner and my only revenge was hoping they both caught it from me. I know that sounds bad, but I can admit I wish ever worse for them than that. The point is, I didn't go to therapy at first.

My next boyfriend and I got into a fight. He came at me and my defense went up and I busted his head open with a crystal candy dish. I went to jail for "reaccting too soon". BS if you ask me and anyone who knows me, but what can you do. I saw a therapist for a year because I was "sentenced" to. It was the best thing that ever happened to me. I was able to spill my guts on the table and she helped me to re-arranged them and put the back inside. I am a much more mellow person now and my outbreaks are much fewer now because I am learning to control stress. Therapists also have lots of friends in high places...in many cities. They have heard it all before and can offer many suggestions. You just need to find a therapist that will actually listen to you instead of sending you out the door with meds right away.

The biggest thing that will help your pain now is to calm down. When you feel pain, think of something else, meditate, anything to calm down. I can tell by your posts that you are about to explode. You simply cannot say "how can I live like this?" because you have to. You have no choice but to learn to manage this. If suicide is even on your mind, then you need to see a doctor NOW. I know you have seen many doctors and most of them have no idea about herpes. You need to call around, other cites/states if need be, and find a specialist. There are cases much worse than yours out there, so there is hope. You will have your life back and you will be able to share a piece of cake and kiss your kids goodnight. Educate yourself on how not to spread it. It doesn't spread as easily as you think. I hope one day there is a cure for herpes, but until then, we just have to learn to manage it.

I had such an outbreak I thought it would never end...2 months of hell. And the fact that ya don't know if there is any relief in sight is just as bad as the pain. I never thought I'd wear jeans ( or pants) again....I was wearing my ugliest..biggest.. dresses cause that was my mental state. I feel so sorry for you.....I did find that peroxide made mine itch worse..and in scratching, I spread it. In experimenting I found 1) washing w/ nuetrogena glycerine soap helped dry them....rubbing alcohol on a qtip put directly on the pimple helped rid me of it..and vaseline lotion Critical care ( it contains aloe, vit E, and vit D) helped contain the itching. I found a lot of the itch was from the peroxide drying my skin so bad. I have also started all the supplements mentioned in posts, as I too cannot handle Valtrex. Bee pollen, oregano oil,probiotics, amongst others.... I wish you the best of luck.... Whatever ya do, DON'T put zinc oxide lotion on them..it spread mine like crazy in a matter of an hour!!

I'm so sorry this happened to you. I hope the jerk that did this to you gets put away for a long, long time. But don't ever give up on your life. Think that you have so much to live for. Your kids love you and need you. If you are patient, I am sure their will be an answer to this problem. I know you just want it to end now and I can understand why, but I think you should do whatever you can to find a solution. I know you probably want to scream now, but God is good. He's not going to let you suffer through this endlessly. There is an answer somewhere. I just know it. God bless you. :angel: