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Original poster

Genital herpes

60 replies

fedup0987 · 05/12/2022 12:39

Looking for a bit of hope I suppose.

I got diagnosed in august... I'd had an outbreak in April but didn't know what it was.

I've got a vague idea where it come from but hard to say due to the dormant/latent stages

Outbreaks have been April. August. October. And again Saturday morning. This is the first time I haven't felt shattered. I had been taking lysine and for the last week I haven't so maybe need to keep on with that.

I have three rounds of acyclovir which I haven't taken (took one dose after being given it at the clinic in august). I got some lomaherpan cream and I've also trialled using arnica on this outbreak.

Am I just going to have continuous outbreaks? Is there anything else I can do?

I know it's cold sores on my house and it's carried by two thirds of people and most don't know and all the other data out there ... but it's a huge stigma still and people are generally uneducated (I was! Thought my world was ending!)

Just looking for someone who's been in a similar situation and can offer any advice.

OP posts:
Original poster
fedup0987 · 05/12/2022 13:47

mumofftwo · 05/12/2022 13:38

I have it got diagnosed in March the first out break was the worst lasted for weeks but I did wait 10 days to go and see someone about it

Do you know where you contracted it? Also struggle with the unknown 😞

OP posts:
Original poster
fedup0987 · 05/12/2022 13:49

I've just called the clinic. I have HSV2. Not sure if it's better or worse. Not sure I should have rang 🤦🏼‍♀️

OP posts:
DisneyPrincesss · 05/12/2022 14:05

I think it's better knowing than not. With HSV2 I believe 5 or 6 outbreaks a year is normal at first and you can expect it to reduce over time.

As PP said, i believe preventative acyclovir can be very good if you are being impacted a lot either by frequency/emotional distress or both.

Original poster
fedup0987 · 05/12/2022 16:01

@DisneyPrincesss yeah I'll consider it I think.

Prob just that way out and feeling sorry for myself - I'm in bed with the lurgy 🥶

Thanks for the responses. Didn't know so many people had it x

OP posts:
Original poster
fedup0987 · 05/12/2022 18:35

MyHerpesName · 05/12/2022 13:23

I have it - probably picked it up in the early 80s although not diagnosed until about 15 years ago. Mine is HSV2. I also get it on my sacrum; very very rarely anywhere on my vulva. Several misdiagnoses from GPs over the years (I suspect they didn’t think of it when a naice middle aged laydee presented with a weird rash).

I very rarely get outbreaks now; if I do I know it’s because I’m fighting off another virus (thanks Covid) or I’m stressed. A couple of days and the itchy patch has gone. I have aciclovar on standby but haven't needed it since my divorce finally settled down.

I unknowingly gave it to XDH where it lay dormant for years, only erupting during our very difficult divorce. That was the one and only dick pic I’ve ever received.

I told DH about it early on in our relationship. He decided to stick with me anyway - he already got the odd cold sore and at the time there was a view that if you had HSV1 then you were less likely to pick up HSV2. We are careful if I have an outbreak but he hasn’t caught it that we know of.

I do worry that not knowing about it might mean I’ve passed it on to the children; that’s my worst nightmare. But if I have nothing has ever been mentioned by either of them.

Romantically it is awkward but the only thing you can do is speak up early on, and be vigilant. For you, it’s an incentive to lead a stress-free life and build your immune system.

One day someone will find a cure, I’m sure, and I hope it’s in my lifetime.

Just reading through the posts again. Do you wonder how you got it on your sacrum? I know you can get it anywhere.
Also... I get two different patches (usually different OB) .. is it likely to spread (ie onto my fairy 🤦🏼‍♀️ 😂)

OP posts:
Original poster
fedup0987 · 05/12/2022 18:37

@HIVpos I hope I didn't offend you with the HIV comment. I know we're in the same boat... ie living with stigma for a treatable disease.

OP posts:
1Sky · 05/12/2022 20:40

I have HSV2 on my skin. I was also misdiagnosed for years and I too am terrified I gave it to my kids as I have one patch on my shoulder and I couldn't rub the cream in and they did it for me so had direct skin to skin contact with the lesions. This is because 4 separate GPs misdiagnosed the rash from infected eczema to psoriasis to shingles.

Eventually I went to see a private dermatologist who swabbed it and said it was HSV2. I get it on my shoulder and my arm. Apparently I was the 4th person that month who presented with an HSV2 skin infection with no genital involvement.

Mine is triggered by my period (which just won't fuck off, I must be the only person willing menopause on, I'm 49, enough already!) and by direct sunlight so it was a nightmare this summer with the lovely weather.

I get a lot of outbreaks but it doesn't bother me too much other than I feel run down and v cold when I have it. Lysine didn't do anything for me unfortunately.

1Sky · 05/12/2022 20:41

Btw the kids rubbing in the cream was well before I was diagnosed and at a point where the GP thought it was eczema!

DisneyPrincesss · 05/12/2022 20:46

1Sky · 05/12/2022 20:40

I have HSV2 on my skin. I was also misdiagnosed for years and I too am terrified I gave it to my kids as I have one patch on my shoulder and I couldn't rub the cream in and they did it for me so had direct skin to skin contact with the lesions. This is because 4 separate GPs misdiagnosed the rash from infected eczema to psoriasis to shingles.

Eventually I went to see a private dermatologist who swabbed it and said it was HSV2. I get it on my shoulder and my arm. Apparently I was the 4th person that month who presented with an HSV2 skin infection with no genital involvement.

Mine is triggered by my period (which just won't fuck off, I must be the only person willing menopause on, I'm 49, enough already!) and by direct sunlight so it was a nightmare this summer with the lovely weather.

I get a lot of outbreaks but it doesn't bother me too much other than I feel run down and v cold when I have it. Lysine didn't do anything for me unfortunately.

Apparently lots of children get hsv1 on their knees due to adults kissing them better as children.

1Sky · 05/12/2022 20:53

@DisneyPrincesss I never thought of that! There is an HSV1 skin infection that children/adults get from sports like wrestling and rugby with lots of skin to skin contact

The dermatologist did say there is a lot of crossover now with HSV1 being on the genitals and HSV2 on the skin. It is so nasty HSV2. I never really feel without it.

I also have hopes of a cure. I don't think a lot of money goes into its research which is a shame.

DisneyPrincesss · 05/12/2022 21:09

@1Sky i believe they are working on a therapeutic vaccine but you're right, it won't be getting much funding.

The majority of genital infections are now caused by HSV1 which from my perspective is a positive thing. So many more people have Type 1 as a coldsores and will therefore be unable to catch it genitally. I believe it's due to increased oral sex as teenagers nowadays, especially for females. I caught mine from a coldsore on his mouth.

I use lemon balm salve which i hear is also excellent as prevention, if you use it on your skin when you're in the sun.

mommatoone · 05/12/2022 21:12

So glad i found this thread! Sorry to hear your going through this OP. Both my sister and I suffer with this, although mine are not genital - I get break outs on my leg. I have had these for abut 20 years now. I were having breakouts once per month when i was on my period. It honestly makes you feel like shit. Dermatologist prescribed aclivoir, but they knock me sick, (my sister is the same). So im gonna have a good read through this and try some alternatives. All the best OP.

OldTinHat · 05/12/2022 21:18

I had my first outbreak 32yrs ago. It was awful! Had outbreaks regularly for a few years after but only get them now when I'm really run down. And they're nowhere near as bad, just a nuisance.

1Sky · 05/12/2022 21:19

@mommatoone I also can't take acyclovir but can take Valtrex (think it's vacyclovir). You don't take as many tablets and it doesn't make you as nauseous. I've only taken it once when my outbreak on my shoulder was so severe they thought it was spreading all over my skin.

Just looked it up - it's valacyclovir (valtrex). You can get it online.

1Sky · 05/12/2022 21:20

@DisneyPrincesss thanks I hadn't heard about the lemon balm, I will definitely try that!

mommatoone · 05/12/2022 21:23

@1Sky - my symptoms are exactly the same as yours . I suppose i have just got used to it (20yrs) Same here at one point with periods, breakout every bloody month 😭.
Sometimes its that bad , it just floors me and im in bed for a few days.
Im gonna look into this a bit more cos im not getting any younger( couple of years behind you) and i worry about the long term affect this might have .

cantbeforeal · 05/12/2022 21:35

I have herpes and I had lots of breakouts at first but then had nothing at all for about 7 years and had one breakout again during pregnancy in 2019 and I've had another one this year which I think was due to stress! I honestly forget all about even having it in between now.

Original poster
fedup0987 · 06/12/2022 06:50

Thanks for all the replies. Definitely some things for me to try.

Awful that it's so common and no cure is on the horizon 🙉🙉

OP posts:
mommatoone · 06/12/2022 07:52

@1Sky - thanks so much.ill have a look x

CloseYourEyesAndSee · 06/12/2022 07:57

Why aren't you taking the aciclovir when you get an outbreak? Get it on repeat prescription and you can head off a bad outbreak with it. Is it type one or 2, I couldn't see from your posts. I have it and have only had one boyfriend be a bit weird about it but he didn't break up with me or anything. Current fiancé doesn't care, his ex had cold sores so we assume he's got it already without symptoms.
it's no big deal, just annoying

HIVpos · 06/12/2022 11:26

fedup0987 · 05/12/2022 18:37

@HIVpos I hope I didn't offend you with the HIV comment. I know we're in the same boat... ie living with stigma for a treatable disease.

Hi, no you didn't offend at all - I just wanted to clarify your comment.
It can help to get support and tips from others as I hope you're finding. Talking about it helps to normalise it, so to speak.

Original poster
fedup0987 · 06/12/2022 12:51

CloseYourEyesAndSee · 06/12/2022 07:57

Why aren't you taking the aciclovir when you get an outbreak? Get it on repeat prescription and you can head off a bad outbreak with it. Is it type one or 2, I couldn't see from your posts. I have it and have only had one boyfriend be a bit weird about it but he didn't break up with me or anything. Current fiancé doesn't care, his ex had cold sores so we assume he's got it already without symptoms.
it's no big deal, just annoying

Because my outbreaks aren't that bad and as people have said it can make you nauseous and it's also not good for kidneys so I wanted to build my own resilience if I could.

OP posts:
TillieMae · 08/02/2023 17:43

Hello. I think I’ve had Herpes for maybe 7 years. (I’ve tried to deny it to myself) I’ve had about 3 outbreaks which have all been relatively manageable. Lasted a few days, sore - pain - blisters all on the same side every time …

I wanted to write and ask if anyone had quite severe nerve pain after nearing the end of a flare up.
My leg on the side of herpes feels painful and sensitive - even my pyjamas touching it hurts. All my bottom/ and that area is the same.

I feel like this flare up has been the worst ! And I’m now worrying that they will get worse. The nerve pain has started after the sores are nearly gone 😳😳

Also panicking that this flare up I’ve passed it onto my husband who since Monday has had a flu like virus and has actually been quite poorly ! I’ve never actually spoke about it to him because I convinced myself I didn’t have it and it was shaving rash. But I know it is herpes 😭

I feel so bad. But I feel if I tell him he’ll think I’ve cheated - definitely haven’t and wouldn’t. If I tell him I knew he’s going to wonder why I didn’t say anything 😭😭😭 xx

DisneyPrincesss · 08/02/2023 18:00

TillieMae · 08/02/2023 17:43

Hello. I think I’ve had Herpes for maybe 7 years. (I’ve tried to deny it to myself) I’ve had about 3 outbreaks which have all been relatively manageable. Lasted a few days, sore - pain - blisters all on the same side every time …

I wanted to write and ask if anyone had quite severe nerve pain after nearing the end of a flare up.
My leg on the side of herpes feels painful and sensitive - even my pyjamas touching it hurts. All my bottom/ and that area is the same.

I feel like this flare up has been the worst ! And I’m now worrying that they will get worse. The nerve pain has started after the sores are nearly gone 😳😳

Also panicking that this flare up I’ve passed it onto my husband who since Monday has had a flu like virus and has actually been quite poorly ! I’ve never actually spoke about it to him because I convinced myself I didn’t have it and it was shaving rash. But I know it is herpes 😭

I feel so bad. But I feel if I tell him he’ll think I’ve cheated - definitely haven’t and wouldn’t. If I tell him I knew he’s going to wonder why I didn’t say anything 😭😭😭 xx

Hi

No nerve pain but i do get leg twitches. Magnesium helps me.

People can get a flu sort illness when they contract herpes. You really should have told him when you met, but I guess you know that. I think you should come clean now before he asks you, makes it less likely he'll think you're lying.

Original poster
fedup0987 · 08/02/2023 18:01

TillieMae · 08/02/2023 17:43

Hello. I think I’ve had Herpes for maybe 7 years. (I’ve tried to deny it to myself) I’ve had about 3 outbreaks which have all been relatively manageable. Lasted a few days, sore - pain - blisters all on the same side every time …

I wanted to write and ask if anyone had quite severe nerve pain after nearing the end of a flare up.
My leg on the side of herpes feels painful and sensitive - even my pyjamas touching it hurts. All my bottom/ and that area is the same.

I feel like this flare up has been the worst ! And I’m now worrying that they will get worse. The nerve pain has started after the sores are nearly gone 😳😳

Also panicking that this flare up I’ve passed it onto my husband who since Monday has had a flu like virus and has actually been quite poorly ! I’ve never actually spoke about it to him because I convinced myself I didn’t have it and it was shaving rash. But I know it is herpes 😭

I feel so bad. But I feel if I tell him he’ll think I’ve cheated - definitely haven’t and wouldn’t. If I tell him I knew he’s going to wonder why I didn’t say anything 😭😭😭 xx

I get various pains... some as you say where it's sensitive to touch and feels irritated. A bit like a burn sensation but not as bad. Aches too a bit like growing pains or excercise pain (like when you've walked miles etc). I also get awful fatigue where I just feel hazy for weeks on end.

You have three options -

speak to him about it and then go and get tested and when they confirm say you've had rashes like this for years and thought it was shaving rash.

Come clean up front that you think you've had it for years.

Get tested and act surprised.

I think honesty will help here. If he doesn't believe you, there isn't anything you can do. Any scenario could lead to him accusing you. You know him best. Xx

OP posts: