I'm desperated

[sub16610]

I'm a 32 years old male. I've been dealing with weird symptoms down there for almost 18 months until the diagnosis came a week ago : I'm HSV2 positive (culture).

On the top of feeling extremely tired and having lower back and leg pain, now I'm turning depressive.

I've always been very careful with my health status, and overall with every aspect of my life. I've been really happy and fulfilled with every part of it, until this diagnosis came out.

I got infected during a month of vacations in South America, where I've had a lot of one night stands.

I don't know how to deal with it. I'm feeling guilty for that. I don't accept the fact that there's not cure, that I'll have to live with that, nor with the fact that my whole life will now be centered around that disease : antiviral prophylactic treatment, abstinence in case of blisters, pain and tiredness when recurrences, having to disclose it to my future partners, and all the hypothetic consequencies it could have on my global health.

I feel like my life has just changed, because of a STI I have contracted even though using condoms.

I blame the incredible lack of information about HSV2 which is I consider a life-changing infection. If I would have heard about it before, I would have had less partners in my life ! And/or not the same !

I've read on this forum about potential cure, but came to the conclusion we're still far away from being able to get it. I don't understand why it's so hard collecting donations for such a widespread disease, especially through the "rich and famous". I'll donate in the next few days.

Many of my perspectives have now changed. I was sexually very active until now, I know things won't be the same again because I will have to disclose my status. I didn't want to settle before the age of 40 because I made the bet that my healthy lifestyle would make me live long, so I could "have fun" a couple more years - I might want to reconsider my position. 

I'm completely lost. I have no one to talk with. A close friend of mine will call me back later today, I told him I have health issues and I need to talk. He will be the only one to know, and I think he's the right person.

I've been having very dark thoughts lately. I'm asking myself if life is worth being lived if I can't freely enjoy sex. Don't tell me about "Positive singles" or whatever application, I'm not interested in that kind of encounter.

I got two hopes now, the first one is the cure in the pipeline of Dr Jerome/Fred Hutch Center, the other one being acceptation of my condition.

Thanks for reading me. I feel for all of you.

[WilsoInAus]

Hey @sub16610 and welcome to the website. The best thing you can do is talk to your friend.

This note may seem a bit harsh in some respects. I do want to lay out the realities. Expunge them if you will.

The first thing to note though is that life is truly wonderful. Quite frankly if your life isn't enough without sex, then it will never be enough with sex. Sex is a tiny portion of who you are and what you can achieve as an amazing human in society.

To do this, you do need to accept that you are an adult responsible for all your choices. There was no information denied of you. You also seem very privileged with access to medical services. You were undoubtedly taught that the only way to truly avoid STDs was to be abstinent before marriage, mutually test before marriage with your life's partner and forsake all others until death do you part. Any religious teaching also includes these messages.

You chose a different pathway. That's fine, you are an adult. It is then incumbent upon you to understand all the implications of that choice, or at the very least, accept the consequences of those choices. Most governments in the world publish considerable information on issues such as HSV-2, there is considerable research and WHO collate worldwide statistics. They tell you for example that South America has a very high incidence of HSV-2.

You also need to consider the cultural differences surrounding HSV-2. For most countries in the world, HSV-2 is not considered relatively a big deal at all. There is no disclosure and the randomness associated with whether a partner has it and whether you will be infected is taken as a vicissitude.

For the vast majority of people, there are many viruses (and there are over 100 we can experience as humans) that do not impact our health significantly or impact upon our longevity. HSV-2 absolutely falls into that category.

It is also your choice as what to do. For example the one night stand culture is not one of disclosure of STDs. It is not required in most cultures within the world. In South America, may half of the women you had sex with carried HSV-2 - and they freely enjoy sex. And they are possibly the most beautiful women in the world!!

I really don't see the point in waiting around for a cure or having any hopes dependent upon it. It is also the case that if you are not enough of a human being with HSV-2, then you sure won't be enough of a human being without it.

Remember Jesus said "wait for me" - what he meant for that was to journey your life not based on hopes and waiting for things to happen but to live a life in faith. Not everyone believes that of course, but the teachings of Jesus and others have enormous value for you to consider.

[ILoveSilence]

@@sub16610 Hey, welcome to the club! Only a couple of days ahead of you, really in terms of diagnosis. Pretty much same thoughts.

1 hour ago, sub16610 said:

I blame the incredible lack of information about HSV2 which is I consider a life-changing infection. If I would have heard about it before, I would have had less partners in my life ! And/or not the same !

Is that so? You heard of HIV? Syphilis? Hepatitis C? HPV? By the way, HPV can give your partner cervical cancer, its not as benign as some people think. You still had all that sex though. Because you will always be you no matter what. There is no point in mulling over your life's decisions now, what's done is done, that's what I have come to accept lately. 

1 hour ago, sub16610 said:

Don't tell me about "Positive singles" or whatever application, I'm not interested in that kind of encounter.

What kind of encounter would that be? Ironically you had no problem hooking up with HSV positive girl before. The only difference is that she hasn't told you about that. 

1 hour ago, sub16610 said:

I don't understand why it's so hard collecting donations for such a widespread disease, especially through the "rich and famous". I'll donate in the next few days.

Well because: 

1 hour ago, sub16610 said:

I blame the incredible lack of information about HSV2 which is I consider a life-changing infection. I

 

I know you are in a dark place right now, I am still there too. But it does get better. What you really need to do now is to focus on your health first and foremost. Its a shame it took you a whole 18 months to seek professional help, you haven't done yourself any favours there really. Look into your lifestyle, your mindset. This may be an opportunity to grow. Stay strong. And bear in mind that you have to be honest about it from now on. 

[sub16610]

12 hours ago, ILoveSilence said:

@@sub16610 Hey, welcome to the club! Only a couple of days ahead of you, really in terms of diagnosis. Pretty much same thoughts.

Is that so? You heard of HIV? Syphilis? Hepatitis C? HPV? By the way, HPV can give your partner cervical cancer, its not as benign as some people think. You still had all that sex though. Because you will always be you no matter what. There is no point in mulling over your life's decisions now, what's done is done, that's what I have come to accept lately. 

What kind of encounter would that be? Ironically you had no problem hooking up with HSV positive girl before. The only difference is that she hasn't told you about that. 

I know you are in a dark place right now, I am still there too. But it does get better. What you really need to do now is to focus on your health first and foremost. Its a shame it took you a whole 18 months to seek professional help, you haven't done yourself any favours there really. Look into your lifestyle, your mindset. This may be an opportunity to grow. Stay strong. And bear in mind that you have to be honest about it from now on. 

Hi. Like many people do, I used to believe condoms would protect me from any STI. There's an obvious lack of information about that.

I've been seeking medical attention since day one. I had a very light redness on the glans, I immediately got blood tested for the whole panel including HSV1/2, everything came back negative. Same panel 6 months later, and another 12 months laters (= one month ago). All negative, except HSV2 in "grey zone" in the two last tests. Until I got ulcers two weeks ago, got them swabbed, HSV2 positive. My guess is that the infection was dormant. 

As you said, what's done is done. I have to face acceptation now, as you did. I guess it's the hardest part. I also need to know my ennemy. Will I get recurrences ? How hard ? Will I be asymptomatic ? Will i get side effects from the antiviral suppressive therapy ?

I still have the right lifestyle, can't really improve it. Maybe it's time to grow as you said. Of course I'll be honest about it.

@WilsoInAus I will reply you a bit later. Many things to say.

[sub16610]

On 10/5/2019 at 11:53 PM, WilsoInAus said:

Hey @sub16610 and welcome to the website. The best thing you can do is talk to your friend.

This note may seem a bit harsh in some respects. I do want to lay out the realities. Expunge them if you will.

The first thing to note though is that life is truly wonderful. Quite frankly if your life isn't enough without sex, then it will never be enough with sex. Sex is a tiny portion of who you are and what you can achieve as an amazing human in society.

To do this, you do need to accept that you are an adult responsible for all your choices. There was no information denied of you. You also seem very privileged with access to medical services. You were undoubtedly taught that the only way to truly avoid STDs was to be abstinent before marriage, mutually test before marriage with your life's partner and forsake all others until death do you part. Any religious teaching also includes these messages.

You chose a different pathway. That's fine, you are an adult. It is then incumbent upon you to understand all the implications of that choice, or at the very least, accept the consequences of those choices. Most governments in the world publish considerable information on issues such as HSV-2, there is considerable research and WHO collate worldwide statistics. They tell you for example that South America has a very high incidence of HSV-2.

You also need to consider the cultural differences surrounding HSV-2. For most countries in the world, HSV-2 is not considered relatively a big deal at all. There is no disclosure and the randomness associated with whether a partner has it and whether you will be infected is taken as a vicissitude.

For the vast majority of people, there are many viruses (and there are over 100 we can experience as humans) that do not impact our health significantly or impact upon our longevity. HSV-2 absolutely falls into that category.

It is also your choice as what to do. For example the one night stand culture is not one of disclosure of STDs. It is not required in most cultures within the world. In South America, may half of the women you had sex with carried HSV-2 - and they freely enjoy sex. And they are possibly the most beautiful women in the world!!

I really don't see the point in waiting around for a cure or having any hopes dependent upon it. It is also the case that if you are not enough of a human being with HSV-2, then you sure won't be enough of a human being without it.

Remember Jesus said "wait for me" - what he meant for that was to journey your life not based on hopes and waiting for things to happen but to live a life in faith. Not everyone believes that of course, but the teachings of Jesus and others have enormous value for you to consider.

Hi @WilsoInAus

Like most people do, I did believe condoms would protect me from any STI/STD. I didn't have any specific infos about HSV being tranmissible even in a protected intercourse.

You say HSV doesn't impact out health or longevity. Since 2 weeks now I see outbreak after outbreak, and since yesterday even my eye is infected.

I am suffering psychologically. It's been a week that I gave up on any social life. I don't know how to get out of this situation.

[Stolo868]

I am surprised that Mr. I know everything didn’t tell you that leg and back pain is not related to herpes and if you are negative on blood after 12 weeks it’s not herpes then. 

[WilsoInAus]

51 minutes ago, Stolo868 said:

I am surprised that Mr. I know everything didn’t tell you that leg and back pain is not related to herpes and if you are negative on blood after 12 weeks it’s not herpes then. 

It would be better if people like you in addition to me shared our experience of leg and back pain but would come to learn that it was not related to genital herpes.

It helps reinforce the message for OPs.

Thanks for the support, keep up the good work, we need more people like you.

[Stolo868]

Even Mrs. Terri Warren agrees that many ppl with hsv suffer from nerve pain so please stop. As you see they could not catch his infection for 18 months you have to learn that every test is not 100% accurate and nobody will fit in seroconversion timeline and typical symptoms. We are all humans and everybody is different, medical field is still uncovered. 

 

Sub iwhat I can recommend for nerve pain is to discuss antidepressants with your doctor if antivirals are not effective. The side effect of antidepressants is reducing nerve pain. Usually the protocol starts with amytryptyline but everybody reacts different. 

[Stolo868]

Here is a quote “

In terms of nerve discomfort – I completely agree that some people with herpes do have nerve pain in the thigh, back of the leg or buttocks. But that is different than twitching. 

 

[WilsoInAus]

54 minutes ago, Stolo868 said:

Here is a quote “

In terms of nerve discomfort – I completely agree that some people with herpes do have nerve pain in the thigh, back of the leg or buttocks. But that is different than twitching. 

 

I have no idea what you are talking about, both @sub16610 and @ILoveSilence have swabbed positive for genital HSV-2. Maybe they will experience a form of nerve pain in the back of their thighs like some do around an outbreak. No one has said anything to the contrary.

This is thread about overcoming the emotion of being let down by a lack of education and talking responsibility for our sexual health.

[Stolo868]

I talk about your lack of knowledge and pretending specialist on every topic. 

[Tone123]

6 hours ago, Stolo868 said:

Even Mrs. Terri Warren agrees that many ppl with hsv suffer from nerve pain so please stop. As you see they could not catch his infection for 18 months you have to learn that every test is not 100% accurate and nobody will fit in seroconversion timeline and typical symptoms. We are all humans and everybody is different, medical field is still uncovered. 

 

Sub iwhat I can recommend for nerve pain is to discuss antidepressants with your doctor if antivirals are not effective. The side effect of antidepressants is reducing nerve pain. Usually the protocol starts with amytryptyline but everybody reacts different. 

Yes I agree testing isn't 100 and if I read it right he tested at 6 months and same panel at 12 months (a month ago) he said. But still 12 months is crazy most diseases is are caught way sooner smh. I wonder if the western blot may of caught it. I'm reading many cases like this and it sure beats the rare cases people say. It's definetly more than 10 patients that Terri talks about witnessing. If you look at medhelp there is rows of pages with pos swabs and neg western blots. Does it really evade the immune system like that. It's all crazy. As for me I was better after neg wb at 8 months but now I'm not too sure. I guess I have no choice but to wirh the facts I have and if I get an outbreak I guess I'll kno then. 

[WilsoInAus]

@Tone123 note that there is no suggestion that the OP tested negative at any stage beyond the window during the 18 months from infection to diagnosis.

There are not more than about a dozen cases of positive swabs and negative WB for HSV-2. They are all carefully documented.

Plus the combination of swabs and blood tests is 100% accurate by 12 months.

[Ely]

On 10/12/2019 at 8:51 PM, WilsoInAus said:

@Tone123 note that there is no suggestion that the OP tested negative at any stage beyond the window during the 18 months from infection to diagnosis.

There are not more than about a dozen cases of positive swabs and negative WB for HSV-2. They are all carefully documented.

Plus the combination of swabs and blood tests is 100% accurate by 12 months.

So after a yr u know all, uhave best answers here salute m8

[Vintage7]

Hey i got it when I was 17 and I was all alone back in the 80's.  I was really bummed out.   They didn't have good medication either.  Now 5 out of ten peole have it and you can take Valtrex 1000mg and have maybe 1-3 flare ups a year.  Im married for over 20 years and have 3 awesome kids.  Its as bad as you make it. and don't think there won't be a cure in less than 10 years.