To be absolutely over life with genital herpes

Argh - this sounds awful for you! I can’t imagine having to go about daily life while trying to cope with that. On the subject of topical creams, the only thing I’ve ever found that works for my urticaria is Aveeno Anti-Itch concentrated lotion. It’s not licensed in the UK, but it is by the FDA in the US, as an over the counter medicine. You can buy it online and it is legal in this country to import an unlicensed medical product as long as it is only for your own use. Not many people know that but please make sure you import from an authorised seller in the US, not some random website, as you have no idea with the latter whether you’re getting a genuine product or what’s actually in it - even better, if you have friends in the US, get them to post some to you.

My thoughts were that Aveeno is a global, trusted brand from an established company and, if that product has been through the OTC licensing process by one of the biggest regulatory bodies in the world, it’s probably ok, even if our regulator wasn’t sold on it (technically it is one of two active ingredients in a UK-licensed anal fissure foam, so it must be judged reasonably safe here - it’s possible no-one’s ever put in a licensing application).

I found it incredibly effective at stopping the constant burning itching that drives me to scratch until I actually bleed everywhere. The active ingredient is pramoxine hydrochloride, known as pramocaine here, which is a local anaesthetic. It’s not recommended for long term use but if you’re having days where it’s really bad, it just instantly seems to make it better. It’s also fine to use on both skin and ‘sensitive mucous membranes’ so labia should be ok. However using medical products that aren’t licensed in the UK is entirely at your own risk, and I’m not a pharmaceutical professional soooo…totally up to you. But it really helps me to relieve itching, burning, chronic pain.

Soz for the essay and completely ignore if unhelpful!

I'm not trying to be annoying but have you tried any herbal remedies? Have a research, annoying there is no cure yet to herpes

DD had this .on meds take a while to work .Salt baths help and try not to get run down as well .Hope you feel better soon x

I’ve been at that point psychologically with UTIs, it’s hard to imagine from the outside how depressed you can get from the constant pain, lack of intimacy and feeling of something being interminable, even if you can pull it together to look like you’re functioning most of the time. I’m one of the people who had a bad initial outbreak of genital herpes but then rapid recovery - mine migrated to my face, and have only appeared there afterwards. I’ve occasionally had near constant facial outbreaks when I’ve been generally rundown and stressed, and have also noticed certain foods (peanut butter, lots of sugar, caffeine or dark chocolate) guarantee me an outbreak, as well as a pms hormonal effect. Obviously it can be a vicious cycle trying to be less stressed when you’re in constant pain. But if you can do anything to look after yourself more broadly and holistically then it might help to nudge things in the right direction. Can you get an extra hour of sleep a night, I don’t think there’s anything better for the immune system? I hope it changes soon for you.

I was the same, I'm 5 years down the line and I never have outbreaks anymore. Haven't had one since 2021. I do take acyclovir 2x daily and buy it online 4 times a year. I honestly doesn't effect my life in any way anymore. VERY occasionally I might feel the tingle or feel a very mild itch.

It WILL get so much better than this 🫶🏻

I am so sorry to hear it is affecting your life so much . I have been taking Aciclovir for the last 7 years without any gap. In previous years, every time I took it for a few months then stopped for a while, I would get the tingling feeling within a few days. I have a yearly check (over the phone with pharmacist ) and they are fine with me taking it continually.
I think there is other medication you can take rather than Aciclovir so you could explore that and ask GP to prescribe.

@ChristmasGutPunch I'm so gutted for you.

I was one of those who commented on your original post with my relatively positive story and I was so hoping your outcome would be similar to mine.

I don't even really have any advice to offer but if it were me, I'd be tempted to massively overhaul my diet. It's the one thing I consistently use as a tool to alleviate symptoms of other health issues I have.

I've found cutting out refined carbs and sugar and UPFs have had success in the past (not with the heroes but other issues!) It's a little drastic (and a bit miserable to begin with) but if nothing else was working, I'd definitely consider giving it a go.

Maybe you need to get someone to take a look.

It sounds unusual for a flare up to last that long and I would question whether there's a bacterial infection going on as well.

It sounds utterly miserable. I hope you find an answer soon x

Oh you've had an absolutely dreadful time of it. Definitely start kicking up a fuss as much as possible, it's impacting your quality of life after all. Got everything crossed for you that you get some relief soon, so sorry I don't have any useful remedies to add.
Is it worth stopping anything topical for a bit, maybe a week, as a circuit break for your skin? I know that prospect is probably horrible, but I'm thinking of when people use a lot of skincare on acne prone skin and it can (for some people) end up being too much for the skin to handle and they have to go back to zero. Don't do it if you can't face it though, this is a totally unscientific suggestion.

I feel your pain. My first 6 months with it was awful. Now my outbreaks are much milder and more short lived.
Sending you a big hug because it’s rubbish x

OP, I'm so sorry to hear you're going through this. I don't have herpes but I have vulvodynia, and I know exactly what you mean about not being able to enjoy or concentrate on anything due to the constant tingling and discomfort. Mine has improved somewhat, but when it was at its worst, I just remember feeling that my life had been ruined.

I really doubt you're alone in your symptoms. I think some people with herpes are offended by the fact that people would be put off dating them, so they try to downplay it - "the first outbreak is the only one that hurts, after that it's just a bit of a nuisance".

Some people take propolis and say it helps. It’s worth a try.

I've tried coming off them over the years but it just flares up again, so I've had to accept that I'll have to take them permanently now. It's been over 7 years and to be honest I didn't know that the NHS isn't keen for people to take them long term. No one has ever suggested that I try and come off them. I've got an overactive immune system so maybe that's why?

What I can say is that there's light at the end of the tunnel, it just doesn't feel like it during the first few months xxx

I think I remember you OP - was it you who was worried about your immunocompromised partner?
So sorry to hear you're having such a vile time of it, are there private GUM clinics you could look into - if that is such a thing? Are you definitely not immunocompromised yourself, or is that worth exploring? How's your diet/water intake otherwise? (I won't ask about sleep or exercise as 'body horror' is accurate)

Her first outbreak was the worst. She’s had a few since over the years when she’s been under serious levels of stress, but she can tell when it’s about to kick off and starts the anti virals right away and it’s a minor inconvenience rather than anything as bad as the first one was

When she does take them she takes them for 3 months even if it seems to have gone away relatively quickly.