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.

That sounds really tough to be having outbreaks for so long. Have you tried taking antivirals?
You can take them at first sign of an outbreak (first tingle or whatever you get first) but I believe you can also take them as a preventative thing if you are getting it often.

You can get it via super drug without needing to go to GP, you need to fill in forms and their GP looks at it

I've read threads on mumsnet where people really downplay herpes (genital) as if it's something you get once and never happens again but as a close relative suffers from it I know from them how often they get it at it's a constant thing for them so you are not alone they have to take medication daily and it's nothing like what I've heard described on here that it's a minor thing that happen once and never comes back again. It's really affected their life.

I've tried antivirals and they don't work for me at all. I feel like screaming but I have to pretend to be fine so my family doesn't panic. It is like a waking nightmare.

I keep thinking "maybe after a month, maybe after two months, maybe after three months" but there has been no let up.

Try the supplement L-lysine. It's really good for coldsore breakouts.

Also salt baths may be soothing?

I am sorry to hear your plight OP, it sounds miserable.

There has to be something out there that can help? I imagine it's the last thing you want to do but you probably need to pester your GP and GUM clinic to find some respite for you. Keep going back, keep asking for ways to relieve your discomfort and pain.

Are there support groups out there? Forums / FB groups etc? Maybe other sufferers can share things that have truly helped them.

You poor thing. Is it possible that you have an additional infection? I know of someone whose herpes wasn't seeming to clear (open sores had gone though) and they had BV and thrush on top.

Sorry if you've already tried this but the main thing that helped me was wearing skirts and going commando as much as possible. And sleeping naked or cotton nightie.

I really hope you get well soon.

Thanks, I've honestly tried everything. Lysine several times a day. I know some people say it gets better after a year (but then no one seems to find it this awful in the first place!) so I guess all I can do is wait but it is no exaggeration to say this seems to have ruined my life so I don't understand why it isn't warned about more or taken at all seriously by doctors. I get that if they can't do anything they can't do anything but I wish they'd recognise the total body horror it is for some people. Plus the risk I'm presenting to anyone I might be intimate with for the rest of my life.

How long did you have the antivirals for? One of my DDs had to have the antivirals daily for 6 months and it made a massive difference after the second month.

she was ready for giving on up them just before they started working.

No pants is absolutely the right move, though. Thank goodness tights season is coming to an end. Now if only the feeling of aching dread in my spine would go away.

Thanks. I was on them for six weeks and my doctor told me I was probably making it worse by stopping my body from building antibodies fast enough. I haven't felt at all different since I stopped them. Maybe should try again but it's horrible taking medication every day when it doesn't seem to do anything.

I’d speak to the sexual health clinic about it. DDs GP was well meaning but not massively helpful. It took a while before she was prescribed the 6 month course and it made a massive difference.

I know it’s horrible when it seems to be doing nothing, but sometimes it’s worth persevering on the chance that it will help.

You have my total sympathy, the first few months were awful for me. I've been on aciclovir maintenance treatment for a few years now and it does generally keep it under control. I wonder whether it might be worth trying this again but giving it three + months to allow it chance to work?

Did your dd find she was ok for the long term after the 6 months? I suppose I should try. For a while I was scared I had some immunocompromised situation going on as everyone seemed sure antivirals would fix it and they just didn't but maybe I just need to be more patient.

Thanks - you're right, I was up at a madly high dose and it was doing nothing and I just gave up. The side effects didn't seem noticeable so I suppose anything is worth a go. It just alarmed me a bit when I thought I might be making things worse. I know the NHS doesn't like people being on them long term in general but I literally cannot live like this.

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.

I hate that this thing is in me forever :( I guess it's an adjustment that at first I thought one outbreak a year sounded bad and now I think it sounds utopian.

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)

Hi @Foxblue yes it's me. You really helped me get through the initial bit which was awful and I really really appreciate you for that. I'm actually wondering about going to a private gynaecologist to have a holistic check over but GUM stuff really seems to be a bit of an NHS monopoly. Besides which I think the only hope is that I'm one of those people who calms down a bit at year 1.

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 don't know if there's any science to it but I can see a general betterness in not needing to (but a thousand times better to take it if it works than just suffer this forever). I think I've actually had it since August and my first sores were Christmas time so hoping to God it might chill out a bit. At least I can eat food again - that part was shit!!

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

Thanks. I actually do find it's good topically so worth a go. I have about fifteen different things on the go (and who knows maybe they stop it being even worse).

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".

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