Just been diagnosed with genital herpes - devastated

[Supernova1908]

I’ve just been diagnosed with genital herpes and I’m devastated (female, 45). I have blisters/sores on both my vaginal area and around my anus and I’m in agony, I’ve even taken the day off work today. The sexual health nurse gave me antivirals to take. After initially trying to remain optimistic yesterday, last night I stupidly started googling things and there was a previous thread on here about how awful people have found it, with near-constant outbreaks or symptoms that don’t go away even with antiviral medication. I’m completely panicking that this will be my life and it’ll ruin my sex life, relationship, holidays, activities, and my mental health 😩 Had anyone managed to live okay with this? Do you always get recurrent outbreaks?

Should have said… im 38 now… so twenty years with no flare ups 🙃😅 x

They are not the same virus. HSV1 and HSV2. Your cold sores have nothing to do with your genital herpes.

my friend caught it in her 20’s and didn’t have another outbreak for 20 odd years. She also said the first is the worse and the subsequent were just one sore really. I’d say almost certainly current partner gave it to you as first outbreak is the worse.

I have Herpes 1 - typically found everywhere except below the belt - but I got one blister on my fanny about 4 years ago, caught from my husband who has herpes 1. The outbreak was painful, but not as bad as you’re experiencing but the emotional element was shit. Shame, stigma, fear!

4.5 years on, I never think about it and haven’t had another blister.

once you cut through the Google crap and if you read proper stuff/studies/research, you’ll feel differently.

take care

I caught it 13 years ago. First outbreak was excruciating. Never had an outbreak since (I’m touching wood!). I found a barrier cream really useful, especially when having a wee as it hurt so much!

hope you got done sleep and it clears up sharpish.

I’ve had this for approximately 18 years. My first outbreak presented as meningitis which was horrific. Since then I’ve had outbreaks monthly. I only ever get one spot and it’s in the exact same place. I took acyclovir at each outbreak but it still lasted a week. I then tried suppressive acyclovir which didn’t really work - although that may have been because you have to take it twice a day and I’d often forget the evening dose. I recently switched to valocyclovir which is once a day and although I still get monthly outbreaks, it’s just a day is so of mild discomfort. The downside is the cost - £220 for 3 months but it’s worth it for me. Mine seem to be linked to my cycle so I’m hoping will stop after the menopause.

Another one who has had it since I was 18 the first outbreak was horrible but it does get better. I'm one of the ones who will be on aciclovir for the rest of my life as it comes back often with me (normally every 3 months) I had to take more when I was near the end of my pregancies to make sure DC didn't catch it off me. I felt very ashamed at the time I felt very upset. My husband is so understanding and we've been together since I found out I had it. It's so common and this thread has actually made me feel a bit more happy in myself aswell so thankyou. My first outbreak was horrible I had it trailing down from my vagina along side the inside of my leg in thick clusters. When I had outbreaks after they weren't as bad but as they were popping up allot and still upset and hurt me the drs prescribed aciclovir on repeat for the rest of my life so I take one tablet every morning and haven't had an outbreak in 8 years x

Thanks so much everyone, it’s so useful to hear everyone’s different experiences. I’m just astounded it’s this bad, it feels like it’s never talked about and the sexual health nurse definitely downplayed how bad it might feel! I struggled to get comfortable in bed all night but managed a fitful sleep. It’s like I keep getting electric shocks or hot needles in my vulva/bum area 😩 on my third day of antiviral and it seems to be no better, with only 2 days left 🥺

Hugs OP. I acquired hsv1 (which causes your standard cold sore) when I was 16. First outbreak I thought I was going to die, it was that awful. I've had one outbreak since, and then nothing else. 2 happy healthy kids and no transmission to partners. Does your partner get cold sores? It would be unusual to acquire hsv2 months in to a relationship if he's never knowingly had an outbreak on his penis

https://herpes.org.uk/news/ this is the only informational site you should look at.
its all going to be ok ♥️

My DD caught GH early last year, when she was 22. She was in absolute agony and could barely walk or sit still. The antivirals really helped and - touch wood - she hasn't had a subsequent outbreak since, though I realise it may happen at some point. The same partner also gave her syphilis 😢🤬 so she was really in the wars. She's still living her life, going on holidays and such, so hopefully you too will have yours under control OP and it won't have too bad an effect.

So that means if he has no symptoms just now . He must have known he had this and didn’t tell OP Is that right. ?

@itsobviousright thank you for sharing that, no he’s certain he’s never had any symptoms and I’ve certainly seen his penis a lot over these past 6 months! 🤣 But I guess he’d maybe not notice a tiny bump or whatever, and perhaps he had something that was painless (if that ever occurs with this!). But no, he certainly seemed to never have had anything and doesn’t get cold sores nor has had one since we met. The sexual health nurse said that it might not have been him for certain anyway, that I could’ve got it from previous partners and it was lying dormant?

I got diagnosed with HSV1 about 5 years ago and haven't had an outbreak since the initial one, although I had tingling for 6 months and took aciclover because of this. I also had to take aciclover while pregnant as a caution but tbh I actually forget about it apart from that. I was very distressed at first but it really wasn't life-changing. I haven't even mentioned it to new partners as, like HSV2 (the cold sore version), it's not contagious unless you have an outbreak. Hopefully yours will be a similar experience.

@Supernova1908 maybe now is a good time (once you have healed ) for you both to get a full sexual health check at the same time .

Then no more shocks along the way. .
Hope you feel better soon.

Yes, but i’d imagine he must have known if he had it in the past, as the first outbreak is pretty nasty like OP is experiencing. I can’t imagine he has it without ever experiencing symptoms.

It can lay dormant, and it can shed even when not in active outbreak I believe. But I think it would be unusual for him to have never noticed an outbreak. I’d say it’s almost certain it’s OP’s first outbreak as it’s so bad. I am no expert though.

I had this in the 90s along with pubic lice warts you name it my cheating rat of a teen boyfriend gave it to me. So, I nearly 60 now and have never er had another bout. I work as a call centre manager and have had loads if staff ring in sick with Herpes over the years. It really is very common. The only issue I had was having to let the midwife know if I had an outbreak during birthing as they need to rake extra precautions. At 45 that's not so likely to worry you. I reckon it will be history by Monday. Hot water bottle and bed for the weekend.

It can be contagious when not in active outbreak, low risk but still a risk. You really should be advising new partners

Oh I missed that. Absolutely potential new partners need to be told, otherwise they can't give informed consent.

Not experience of genital herpes but I am a life long severe sufferer from coldsores which I think it is same or very similar virus. Given how sore my face can get I am only imagine the pain and I am sorry you are going through that.

One thing that has massively helped me is taking an L-lysine supplement daily. I’ve gone from having 3-20 coldsores a month to 1 or 2 a year (at its worse I had my whole lips surrounded by coldsores as well as near my eye and up my nose!) so the change has been massive.

Hope you find relief soon and 🤞🏻you don’t get many more outbreaks (it does seem to vary hugely).

In time you will realise that it doesn’t define you.

The first is awful, I had flu symptoms too and was basically in bed for a week. It's so much more common than you think. I did have a lot of subsequent outbreaks and whereas normally it repeats in the same place mine goes where it likes and id have 5-10 ulcers each time. I had repression therapy (took the meds daily for 6 months) and haven't had an outbreak since. Even when I did it during it was so much milder.

Use the lidocaine, ice some flannels, get a squirt bottle of water to squirt over you while you wee and sit in some not too hot salt baths if you can. Cotton pants all the way!

My triggers are really hot weather, being run down, and alcohol.. whoo!

Honestly, you'll be fine once you heal from this one!

And here’s a reminder to both get an STD check before you commence a sexual relationship.

Hi OP,

I've only read your updates, not RTFT so forgive me if I am repeating what others have said. I was diagnosed 12+ years ago and was also devestated, I had similar "is this the end of my dating/sex life?" thoughts, and my initial outbreaks were painful and very upsetting because there is so much shame attached.

However, some tips and info I wish someone had given me:

• only look up medical information on sites such as NHS Choices, the WHO, and support groups/asscoiations - plenty of people scaremonger about it but the reality is more like 80% of adults carry HSV1 and/or HSV2 but you (& I) fall into the unfortunate 20-25% who are symptomatic.

• HSV1 & 2 can both cause sores on the mouth or genitals, but HSV1 is more likely to reccur on the face, whereas HSV2 is more likely to reccur on the genitals - find out if it is possible to get an antibodies blood test to identify which strain you have.

• anti-viral treatments can be taken continuously as a supression treatment. I had a 6-month daily prescription of aciclovir when first diagnosed because the outbreaks were happening every 3-4 weeks and the impact was obviously devestating (not trying to de;oralise you, just being honest about how upsetting the pain/shame/recurrence is at first).

• ask for a repeat prescription of aciclovir so that you have a stock of pills at home. It is only really effective at managing an outbreak if you take it as soon as you feel symptoms. I also ask my doctor for a top-up if I know that I have a really stressful period coming up (moving house) or if I am already ill (flu, generally run down).

• pay attention to your health in general: your body makes antibodies and will eventually surpress the HSV itself, but the virus "lives" in your nerves. As with any recurrent infection, it will come back when you are already low. Also, I personally feel like I am coming down with flu before an outbreak (aching hips and thighs, cold shivers) - pay attention to your pre-symptoms as they will help you take aciclovir in time and manage it better.

• Buy yourself soft cotton underwear, wash yourself gently with lukewarm water and dry off with the cool setting of a hair dryer. The dryer your skin the less it hurts. Keep a small water bottle in the loo so you can rinse after peeing and before wiping, urine can irritate your skin more.

This is already an essay so I will re-post if I think of anything else, but the other I'd say is be kind to yourself. People are cruel and make assumptions about your behaviour when you catch an STI, but ANYONE could be carrying one.

Herpes is passed on from skin to skin contact, you don't even need to have full sex to catch it and sometimes a condom wouldn't save you either. You can be the most "responsible" person on earth and still catch an STI purely because you didn't know it was a risk from this partner. Herpes does not say a single thing about your worth as a person, a partner, a lover, a friend, and it says nothing about your behaviour or morals. Chin up. xxx