Just been diagnosed and feel lost on what I should do. Anyone willing to share their experience?

Sexual health
1

Hi,

For just over a week now I have had red raised sores on my penis, which are causing a lot of pain pretty much all of the time. I went to the Doctors who completly mis diagnosed me, and when the problem continued to get worse I went to see one of the Sexual Health Nurses who quickly determined the problem was Herpes. This made me panic quite a lot!

I have been taking the anti viral medication that she gave me, and she basically sent me on my way with 2 leaflets to read. Obviously, after having time to think I have a lot of questions like; How often do outbreaks occur? Is there anything I can do to prevent them? can this be transmitted even when I don't have an outbreak?

The above just sort of scratches the surface in terms of the questions I have, and my main worry is telling people, especially future girlfriends. I know for a fact I will not be telling anyone else.

How have you all gone about telling partners? Mainly that you have just met, before any sexual contact. 

The day I was diagnosed I had a date in the evening. This was a second date with a girl I have known for a couple of months now. The date itself went really well, and due to her living in another city she was staying at mine, like she did on the first date (Nothing sexual has happened with her). Things started to get a bit more intimate, and It was pretty obvious what was going to happen, however I didn't let it and was very shy and basically put my barriers up! I basically panicked and now I think that unless I tell her what has happened, then I have basically ruined any chance of a relationship. 

The next day I was very down about the whole thing, and kept thinking why would anyone want to be with me when I have this problem?!

I stopped panicking yesterday and started to do a lot of reasearch on Herpes, however I would love to hear any of your stories or listen to any advice you might have. Especiall on the discussion with a brand new partner. 

Thanks in advance,

Tom 

2

Hi Tom,

Sorry to hear you are a fellow herpes sufferer. I was only diagnosed on Monday. Type two woooo. Not. 

Anyway. I have been miserable as hell since I found out. I've been in a looonnng miserable relationship for years, then met the guy of my dreams three months ago. he lives on the other side of the world and I have just been to visit him only coming home the weekend just gone. We both played it 'safe' you know, got 'full' sti check ups. Came back clear. All good. Little did we know this does not include a screen for herpes. 

Anyway, long story short, I've just been over there to see him and got very ill one week in. All the classic symptoms of a first outbreak flu, tonsillitis, open sores etc. Not good. Spent a fortune on docs and yes. The results are in. Type 2. So anyway, I have been very depressed. Crying. Feel disgusting. Like damaged goods that nobody will want. I felt like I had gone from having everything to offer to being just nothing. Obviously my other half is very upset too that this has happened, that he has it and worst of all, that he gave it to me. 

What I want to share with you is my story since Monday. In three short days I have gone from rock bottom to ok. I literally have not moved out of bed. I felt unclean and gross. But then I started to speak about it. I told my parents who were very supportive, but then I told my brother. It turns out he also gets coldsores on his face. He also has herpes albeit in a different place. I was not alone. Someone else in my family has the virus. This made such a difference for me. He has had the virus for three years and nothing has changed. He is still the same person. 

Then it dawned on me. Something like 60-80% of people have herpes. 1 in 4 have genital herpes. That is a LOT of people. If you have oral herpes, you can give it to someone in their nether regions through oral sex so they also have to have that awkward conversation when they meet someone new. If I met a new person and they got coldsores, I would want to know before they kissed me.

I read a website that suggested changing some of the phrases. Change 'genital herpes' to 'cold sores', change 'STD' to 'virus', instead of saying you 'HAVE' a disease, say you are 'prone to' or 'get symptoms'. It makes it seem much less than it is. That's all they are at the end of the day. Cold sores. There is a risk a new partner will get it. Chances are they already get cold sores anyway. So many people have to have this conversation. You are not alone. Imagine what you would like to hear. If you never got herpes. How would someone say it to you in a way that wouldn't freak you out? 'I really like you, but before we do this, I have to let you know that I am prone to cold sores. If we kiss and have sex, there is a chance you may get them too both on your face and down below'. Not so bad as a conversation starter, and from there you can reveal more info. 

In reality yes, it's still gross. I have horrible symptoms at the moment. I have type 2 so I am probably going to get outbreaks ALL the time. This sucks. It really sucks. But I am going to do something about it. I currently do not look after myself at all. I barely eat, what I do eat is crap, I don't sleep, I go out on a weekend. I am going to change all this and actually look after myself. I am 25 now after all. I will still go out with friends, but for the days before will get early nights and eat well. I am going to try and boost my diet with l-lysine which supposedly reduces outbreaks. 

I hate herpes. But in three short days since I got my results, I am already coming to terms with my herpes. It will get easier. 

3

Hi Tom!

 I was diagnosed with HSV about 2 months ago. When I found out, I was devastated. I felt dirty and I thought that my life was completely ruined. I had just started talking a guy and didn't know how I was going to tell him. I was so scared that he would reject me and that I would be alone forever. I had to wait about a week before I could tell him because he was at work and I wanted to tell him face to face. During that week, I researched as much as I could about HSV and prepared myself for whatever questions that he may have.......if he even wanted to bother with asking me any. The night I went his house, he knew I had something to talk to him about and after 2 hours of me sitting on his couch building up my courage, I told him. His reaction?  He laughed at me! He said that he knows all about herpes and that he knows how to protect himself. In the end, it didn't hinder how he looked at me or how much he wanted to be with me. In fact, I actually cried because he wasn't interested in hearing my "big speech" that I had been preparing for a week! 

 Now, some people won't be as mature about it. You have to prepare yourself for the possibility of rejection from those who are not open-minded or educated on the topic. 

 Catching HSV, was the best and worst thing that could have happened to me. Nobody wants to have to live with this nuisance, but it actually saved me in a way. It helped me to change my lifestyle by eating better, drinking less alcohol, and by giving me a "test" to know if a man truly cares about me or wants to just use me. I am happier now with HSV than I have ever been without!

 The outbreaks vary depending on the person. Some will have 1 or 2 and then never have another.  Others will have continuous outbreaks thought out life. The outbreaks tend to taper off as time goes by. I had an initial outbreak and then kept feeling symptoms of another one within a week after the first one. I immediately called my doctor and she put me on daily suppressants to keep the outbreaks at bay. After a year, I will come off of it and see how it goes. 

 You can transmit the virus at any time. If you have sores, transmission is almost a guarantee. In between outbreaks the transmission is very low, but still possible because the virus can shed at any given time. Just remember to use protection and pay attention to the signs of a pending outbreak. 

 I know this isn't fun to have but after a while, you realize that this is only a small speed bump in life. It's not as bad as most people think. The stigma that comes with the word "herpes" is the worst part! To be honest, there are days when the thought that I have this doesn't even cross my mind. 

 Keep your head up and good luck! smile

4

Hi,

Thanks for replying so quickly! There are so many phrases I can type into google before I thought it would be best to hear from actual people!

Sorry to hear about all your problems with this. Hope this isn't a little naive of me, but am I right in thinking type 2 is genital and type 1 is oral? I haven't officially been diagnosed by a doctor, but instead the nurses at the STI checkup place. I plan on visiting a doctor next week, as I have just moved back to Uni so don't have a GP. Did you receive medication to get rid of the first outbreak? 

The statistics have really helped, and I keep thinking about that when I get a bit down about it. Such as, I live with 8 other people, so when you include myself, there is one additional person with it - might be a bit stupid, but it's helping! cool

How did you first bring up the conversation with your parents? I'm going to try the word replacement suggestion, especially when I tell any partner in the future - I won't be discussing this with anyone else!

You seem like you have done a lot of reasearch, so thanks for sharing! I just feel lost at the momement, having not had a chance to discuss this with anyone and hear about any remedies! I think I need to go to the doctors asap just to discuss this, if nothing else. 

5

Hi,

Thanks for the reply! 

Glad to hear that he responded in that way! Hope you don't mind me asking, but did he just know of herpes through education, or has he experienced it himself? 

Has it been worth going on daily supressants? 

From what you said I assume this can also be transmitted when using protection? I am at Uni, and have to face the fact that at some point I might end up sleeping with someone as a one off (I would always use protection), but I'm unsure if I would need to make them aware first or not!

Thanks for your advice and help. 

6

He knew of herpes because his friend has it and his friend's wife hasn't caught it. I didn't really ask him if he knows from discussions with him or if he has researched it, but I can tell you that if I know him as well as I think I do, he didn't research anything! Lol. 

 Daily suppressants have been a blessing!  I hate taking any medication, but I definitely didn't want to deal with constant outbreaks. 

 Herpes is transmitted through skin, therefore it can be transmitted even with protection. I caught herpes from someone that I used protection with every time. This is why you should tell every partner that you plan on becoming intimate with. 

 I'm so glad that we could help you. Feel free to contact me if you have any questions at all or just need to talk. I talked to someone on here daily for a month and it helped me tremendously to cope and realize that I'm not alone. smile

7

Hi Tom,

Yes, type 2 is usually associated with genital and type 1 with oral. however, this has now all changed. although it is more unlikely for type 2 to cause oral herpes, loads of new cases of genital herpes are caused by type 1 due to all of us youngsters going crazy for oral sex. 

No, no, the stats helped me too. Really hold on to that. If you think that 80% of your flat have some kind of herpes, then that's nearly all of you !!! The herpes free people are actually in the minority !!

Oh god, well i just got home from my trip, was very tired and emotional, completely jetlagged so hadn't been to sleep, also got my results sent to me at 3am so i was definitely not going to sleep after that, i basically called my parents who were on holiday in tears, broke down and said ' i have something to tell you. i have herpes' and they were just like. and? is that it ???? they thought i was going to tell them something dreadful like i had burned the house down. it's not even a big deal to them. immediately my mum told me it was the most common STI on the planet and then they have just been really supportive since. 

The real life changer for me though was my brother. i felt really awkward telling him but we are really close and he is studying medicine anyway and has effectively become immune to all things vagina and penis, and he was also just like. so? everyone has herpes nowadays. it is almost fashinable to have herpes. then he went on to tell me how he had been getting cold sores for three years and that he had had chlamydia about one million times. 

For me, if i was telling a new partner, i would try to not say the word herpes at first. i know for me, the word 'herpes' is just horrible. why couldn't they just call it 'fever blister virus' or 'cold sore attacks'. herpes is just an awful word !

yes, i started taking aciclovir 400mg three times daily whilst on holiday. i went to the doctors once home on monday to get everything on my records and also get more drugs as i had a new blister appear sunday evening. im now on a course until next wednesday. the drugs stop the virus multiplying but once you stop taking them the virus can continue if you havnt finished with your outbreak yet. get to your doctor asap as if they do a swab test the sores still have to be relatively fresh so they can get the fluid out of them. next week may be too late as they may have healed by then. you can request a blood test but this will probably not prove anything definitely until you've been infected for a while so that your body has had enough time to produce antibodies. 

i know how you feel when you say you feel lost, but coming on here has helped me loads. i only wrote my first post yesterday and had some lovely responses. there are millions of us out there, and we are a growing community every day. chances are the majority of people will have herpes soon and it will actually be a surprise to find someone without it.

The real problem at the moment i think is that if 80% of people have herpes, why isn't it routinely tested. it shows up in your blood after about 16 weeks from infection. herpes should definitely be included in STI testing. the health authorities justify it in saying that the majority of people don't get symptoms and testing them would only cause negative psychological impacts on that person. WELL what about the rest of us who do get symptoms, get tested and feel rubbish about ourselves? Also, these people with no symptoms will still shed the virus. that is what happened to me, my other half gets no symptoms and had no idea he was infected. it is not fair to just let everyone carry on about their normal infected no symptom life, spreading herpes to people who may get symptoms!? no wonder its an epidemic. there wouldn't be so much stigma attached to it if we were all tested and virtually everyone in the uk found out they had the virus. 

In a nut shell, you have done nothing wrong. try not to feel bad, or blame yourself. i know damn sure that i am not a promiscuous person, i have slept with barely anyone and always been in relationships and always been faithful. i didn't deserve this, you didn't deserve this. no one deserves it. but the majority of people have it. they just dont know about it. we are just some of the unfortunate few who get symptoms and know we have it. 

8

Hi,

seems like all the reactions you have had have been positive. I'm going to try and tell someone I know about it, but don't have a clue who will be the lucky person!

I had a blood test taken at the STI checkup place. I tried to signup at the doctors and they have been really unhelpful. First of all saying they had no forms so I had to go back today, which I did, and then saying i'm not allowed an appointment until next week! Might have to try another doctors! 

Coming on here has helped massively! The thing that frightens me mainly is the conversation that I will have to have with people, and even though I am only 21, and all that business, my mind still drifted towards the future. The prospect of finding a girlfriend, who may end up being my wife and needing to tell them...I suppose it's just the fear of scaring someone off. At my age things are going very slow if you haven't slept with someone by the 3rd date, usually its much earlier...so the thought of having this discussion before someone even knows me is slightly daunting!

Talking on here is making me feel much better, and now I know i'm not the only one!!

9

My first attack was about 3 days after contracting HSV and lasted about two weeks with one spotted cluster of red rash like sore , which turned into a open blister thar covered itself with some kind of web like scab that would disenagrated immediately upon contact with water exposing the sore on upper shaft of penis. The sore hurt and burned especially when my underwear would rub on it.  Almost 3 months later the sore appeared again not as bad and was cured in one week. The only reason I looked was because I came down with Schambergs disease mostly on my left leg. I immediately suspected herpes attack, because the first outbreak I had extreme pain from lower back down my left leg where I could not even walk on a treadmill. Most doctors will denie herpes can affect a person that way, but I had two doctors say it was due to herpes! From what I've read antiviral meds help reduce transmission by 50% and wearing a condom some more! but nothing is 100% gauranteed due to viral shedding underneath the skin. 

10

Hey,

Yes it really does help talking to someone about it. It really really helps. I've just seen your post about telling people before having sex. I know. Daunting right. I have been in your position, I only finished my masters at Uni last year I know what it's like to be young and partying like crazy. Even though I've been in long term relationships, we had sex before the third date. We didn't even date. I just met these people and we just clicked instantly. Why wait nowadays anyway huh there is no need to. But yes. Even if you use protection, you have to tell them in some way that there is a risk they may get this virus. 

It's only fair. Otherwise the problem just continues and more people end up feeling like we have. 

At the end of the day, people make their own decisions to sleep with people. Most of the time you guys will probably be drunk. Maybe try to use softer phrasing and all should be ok. No contraceptive method is 100% effective, neither are methods to protect against STI's. I think if you use a combination of condoms plus daily antivirals plus not having sex when u have or have recently had blisters, the transmission rate drops to like 1%. That's like. 1 in 100 times you have sex. That is a lot of sex to have before someone catches it. 

Don't worry about finding a wife now. Enjoy being young and single. I would never recommend relationships at that age anyway. I spent from age 16 onwards in long relationships. If I could go back I wouldn't settle until I was Atleast 25!!!! Haha. 

And when you find her, she will understand. By then there is a good chance she will have genital herpes too anyway. Ha ha ha. Sorry. We have to try and find light in these situations.

If you are really worried, there are dating sites for people with herpes like herpes fish. However, I think it is wrong to single out people with herpes like this considering there are so many people with the virus out there. BUT. Each unto their own I guess. 

11

Exactly. Glad you understood what I meant about the whole having sex at uni thing, becuase it does happen. some of the suggestions you have had on how to tell people i.e. refer to it as a risk, and that you might get cold sores on your face and down below. I'm also currently nursing a broken arm and ribs, so I probably won't end up having sex in the next couple of weeks anyway due to the pain. 

I'm happy being single at the moment, however I am going out with a girl on friday so my mind has constantly been on how and when to tell people about this.

Well if herpes is as popular as it seems, she might well do smile 

Did you just got to the doctors to get the antivirals? 

My current does ends on friday, and despite some redness going and the pain vastly reducing, there doesn't seem to be much improvement so I think Im either going to go back to the STD clinic or the doctors. 

Do you know of any over the counter medications that can be used? 

12

Also, did you have any sore aches in your legs? I have had sore legs today and a bit last night.

The herpes, legs, ribs and arm....it's all come at once!!

13

Hi eugene,

Thanks very much for your response!

Bit of a personal question...I was told sort of soak the head of the penis in warm water from the shower which will help with the sores. Did you do this, and did you find that it worked?

Have you had many outbreaks since the first one?

Also, just for my knowledge, is viral shedding where the virus comes up to the skin? is there a way to anticipate this? 

14

Right, apparently I've read that using any over the counter creams meant for oral herpes just do not work on henitsl herpes. Apparently there is just no point putting them on. Which is a shame and frustrating when maybe trips to the docs are difficult. I've read you can do things like out tea tree oil on but firstly. Ow. Can you imagine the pain. Secondly. Claims that these dry out blisters faster- I'm unsure about this as the virus comes through your nerve endings and breaks at the surface. I have a feeling you just have to deal with however long it's going to take and that nothing topical will clear them up quicker.

The first outbreak is supposedly the worst and the most lengthy. Weeks I am talking. I got my first two blisters maybe 9 or 10 days ago now. I got two more that I can see probably mid last week. I thought these were healing but they havnt yet. And one of them yesterday developed a new blister head so I don't know if this was a new blister on top of another flaming blister. Not cool. So gross. Anyway. I started taking antivirals last Thursday and I picked up another 7 day course Monday just gone as I clearly wasn't done with my breakout yet. 

When I was ill with a fever, yes. My legs. OMG. I got ill late Friday night. Probably like 2-3am Saturday morning to be honest. I didn't really accept I was ill and fevery on the Saturday and actually went bungee jumping and sky diving, the days following this me legs behind my knees were absolute agony. I thought it may have had something to do with the activities on sat but It just went on and on so I can only assume it was down to the virus. 

Ah dear. Herpes hey. 

15

Ahh ok. That's annoying! To be honest water has only just stopped hurting when that is on it so not going to try anything else!!

Ok well if this is the worst it is going to get then I am glad about that! I think, judging from what you have said, I am going to go to a doctors tomorow, even if it is just the walk in service at the Uni. 

Wow herpes, and skydiving and bungee jumping in one day! That's impressive! 

sorry for all the questions! I have been doing my own research but I just had so many things I wanted to ask! 

16

I guess I should  consider myself lucky my herpes is just near the pubic hair on upper shaft of penis. The water didnot hurt ,it was just strange that the scab would litteraly dissolve away the moment water went on it while taking a shower.  My doctor prescribed mupirocin ointment and antiviral meds 5 times per day for 10 days.  This was my first attack and had another two weeks ago since I contracted herpes last May. There is no way to really know what or if anything helped 

 

17

Usually there will be a tingling feeling from previous site of herpes outbreak . At my second outbreak I had nothing except the sore presenting it's self, which was smaller and very slight sensitivity.  I have been taking Minocycline 100mg daily for adult acne for over 3 weeks. This medication has cleared all my acne and tingling. I use to have a lot of tingling on nose with pimples. In my opinion I had herpes on nose and scalp , if that's possible. It felt like something was crawling underneath my skin on my penis and nose.  The minocycline took all the tingling away .

18

Nah it's good. Good for me to talk about it too. I've been really worried that I will never feel sexy again and that I would just completely lose my sex drive. You know. Because there is this great big looming cloud over my head. But I'm getting there again I think. I've gone a whole day now without crying which is just awesome. 

Yes you should definitely go to the doctor. They see herpes all the time so should get you sorted really quickly. I asked my doc to put it on my repeat prescription so any time I get an outbreak I can just go and get the drugs by putting a request in for a prescription rather than having to make a dr appointment. Id Deffo recommend that 

19

I wouldn't worry about the whole sexy thing. I think with time it will get easier. I have completly lost my sex drive now if im being honest, but that might be because i'm still suffering!

Next time you feel like you want to cry, have a read over everything you have typed to me, because it really has worked wonders and I still don't feel 100% about it, but I feel a million times better than I did! 

I'm actually more angry than upset. I'm not an angry person in any way but I just blame myself even though it was essentially an accident. 

That's a great idea. I want to get it properly diagnosed, and get it on my records. If only the doctor had picked it up when I went this time last week... I genuinely think it was the first time a patient had taken their trousers down in front of him!

20

Hey Tom,

Yeah I'm sure it will come with time. I'm just worried me and this new fella (namely me) won't be able to get over this whole thing and it won't work out. I've gone from being head over heels to just. Meh. I want to get over it, move on and just be happy. But at the moment I just spend a lot of my time thinking about herpes. 

I try not to be mad, I know it's not been done intentionally. But it hurts that it did happen. I hate these symptoms. I don't know when I will stop being infectious. I am paranoid I'm going to like, spread it into my eyeballs or onto my nose or in my mouth all the time. I just want the symptoms to go away now. To still have open sores after nearly two weeks is so unpleasant!! I'm working from home Atm but I really have to go back tomorrow. I don't know how im going to deal with sitting at my desk for so long.

As you may be able to tell, I'm still jetlagged, tired and now awake and overthinking at almost 4am.

Yesterday I went out, got some things fined saw some friends, id put some make up on and done my hair and yes I was getting attention again which felt good. But inside I was just like. Hmmmm. I have the herp. 

I'm getting better. Much better. I've not cried since Tuesday. I guess I just need a little more time to accept and move on. 

I know, unfortunate about your doctor. Unfortunately some are really pants. Do you research before you go and ask to get the drugs put on your repeat though if you can. It will make it so much easier. When I saw my uk doctor she didn't know much about herpes but she was very supportive (which was good because I walked into her room and just burst into tears ha ha). She made me feel like millions of people out there have herpes and that it's just not even a big deal to have it. 

That is where I need to get to. And you too. It's not a big deal to have it.