To be absolutely over life with genital herpes

[ChristmasGutPunch]

Was diagnosed just before Christmas and since then the symptoms haven't stopped for a single day. Not one! Can't have sex with my partner. Can't concentrate on my job because of the constant tingling and sciatica. Can't enjoy a holiday or a film or a book. Mumsnet was so kind to me at the time and I had a lot of hope but the people who were fine again quickly are on another planet from me. The weirdest part is it's HSV1, which is supposed to be milder!

Tried to get a follow up appointment at the GUM clinic but they are booked out so I need to call back in April to see what's available. I know they can't offer me anything more anyway. I think it makes them uncomfortable having to see patients like me became it's obviously just a depressing case of hope for the best/get used to a reduced quality of life.

If this is what my life is going to be like now I don't think I can do it. I know sex is just one part of life but being unable to be spontaneously intimate or even reliably sit down comfortably is just torment.

What a shitty, tawdry, pointless, ridiculous thing to have ruined my life. I actually cannot believe this has happened. Feel like I've gone mad. And I can't believe people still have carefree sex when this stupid thing is out there. I suppose it's not that bad for most people.

What's my aibu? That I can't live with something that doesn't seem to bother most others that much, I suppose.

It is like the seat of our whole bodies it's terrible, isn't it. Sympathy right back at you.

I think men are much less likely to suffer with it so maybe that makes a difference to the reported effects stats. I also have quite sensitive skin so I wonder if I just "hold it in" less effectively than some people.

But yes it's terrible. I think a lot of transmission is asymptomatic (that's how I caught it - from someone who would still be oblivious if I hadn't told him) and some of us are just the unlucky end of the chain.

Thanks, @Jifmicroliquid and yes it's awful. At the beginning six months felt unbearably far but now if I could be improved by June I'd be ecstatic.

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.

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

@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.

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.

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’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.

Thank you for being so encouraging. I think I'm pretty healthy (I was too sick to go to the gym for a couple of months but that has passed now and I'm trying sauna therapy too) but there's always room for experimentation so I will try cutting stuff out. I am quite into microbiome stuff already but what usually works for eg passing bugs doesn't seem to be touching this.

I guess if I think about it I DO feel better than I did this time last month so maybe I do just have to be patient (and get back on the antivirals).

I feel quite scared at how hard it has been to see an NHS doctor. I ended up paying for my own hepatitis and HIV tests because I was sure something must be behind my apparent non response to antivirals but they just weren't taking me seriously enough to see me in person for that. (You can tbf get a home hiv test but who has the courage to take that when they think there's a serious risk of a positive??)

Thanks @dryt and I know. It's like being a prisoner in your body and you can't really talk about it. I think the last day of my period is my trigger, actually. That lowest point in the month before I start building up again. I don't think caffeine is related (God I hope not - although the fact that I'd give up coffee for this is a serious testament to how bad it is)

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

Yes this. Also eat a very low argenine diet during flare ups.

https://healingcycles.files.wordpress.com/2013/07/lysineargininee_foods.pdf

Take lysine supplements
I know lysine balm works well applied topically to cold sores. Might be worth trying.

What about a hepatherm and sterilise with surgical spirit between each zap?

Things I've tried in case helpful to anyone else:

Melatonin - supposedly plays an important role in immunity. Helps me to sleep so at the very least that's got to be helpful.

Omega 3 supplements - anti inflammatory and good for wider health.

Quercetin - supposedly supports immunity.

Olive leaf - recommended by herpes virus association.

Bromelain - anti-inflammatory.

Glutamine - supposedlgood for repressive.

Magnesium glycinate

Turmeric - theracurmin as supposedly more absorbent

Wild oregano oil - antiviral properties and works topically

Lemon balm salve topically

Probiotics in various forms

I think all of this helps around the edges but fundamentally I've had sores and nerve pain and flashes in my inner thighs for over three months :(

Oh also lysine several times a day.

I haven't actually tried herpatherm but will give this a go. But the spots pop up every other day so I'm not confident I'm ever not infectious.

I would buy hepatherm and sterilise the top of it after every zap and have Epsom salt baths to soothe and see if that helps even a little bit.

OP, my close friend really suffered at first and mentally struggled, tried antivirals which marginally helped. However, her body eventually got used to it without medication and now she rarely has an outbreak (i think once or twice a year). Anyways, she's settled, married with three kids and it didn't stop her from dating before she met her husband. Speak to a GP and hopefully symptoms improve over time but things should get better.

Thanks both - I don't actually have a bath!!! European style chez ChristmasGutPunch (god I wish I had one at the moment though).

I DO feel better than before (although inner thighs burning away right now like torturous unstoppable reminder) so I hope it fucks off oh God I do.

But although this seems like solipsistic plea for help (I guess it is a bit tbh) I also wish this condition were talked about more and cared about more. I know it won't kill me (assuming no encephalitis etc complications) but I think it can make lives unbearable.

This sounds horrifying so sorry op I hope it gets better soon.

Perhaps some time off work and relaxing will help your body clear it as I know stress can make shingles appear maybe this virus works in a similar way?

Also, should you speak with your gp? It seems your immune system isn't working that well perhaps they want to investigate why that is?

I was terrified about my immune status for ages @Unexpectedlysinglemum but I am pretty sure now it's just a shit virus that completely fucks some people. Blows my mind that most who have it never get a single symptom while I'm here feeling like a modern day leper.

I'd echo the cold sore remedy.

My DP had to have the six months anti viral regime and that finally kicked it into touch and now outbreaks are few and far between and go quickly as he takes antiviral as soon as he suspects an outbreak. The first year is tough but I think as others have said, to try with the antiviral for a longer period. Poor you though, it's rubbish

icepack-obviously NOT directly but like wrapped in a pillowslip multi times...aclivor.and a smidge of germolene.no pants.xx