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.

Did you get checked for full STD’s at the time of diagnosis?

When was your exposure?

Oh, much sympathy OP, I am sufferer of 40 yrs plus, so I’ll tell you how I manage my symptoms to see if you can use any of them..

Always always keep Zovirax cream near you, first sign of any irritation, get the cream on the area.
Always keep anti-viral pills around, I use Aciclovir 400mg. I blast myself with the “outbreak” dose then keep to the “keep it under control” dose for at least a fortnight after… some people take 1 pill a day always to ward it off, but I’ve never had to.

Any aches and pains can be eased by Ibuprofen, as they are anti- inflammatory and do help. Regular doses are best.
I have really hot baths and showers as that eases the muscles and aches and pains. Deep Heat rub is good on sore muscles as does a hot water bottle. My aches are usually buttocks and thighs, occasionally lower legs.

I try and keep my lesions dry, and use medicated talc to help with itchiness. Some people prefer keeping the area moist with Vaseline, but I didn’t get on with that. Air drying the sore area sometimes helps, staying cool with looser clothing, natural fabrics, no jeans, and not being too hot in bed all keeps you comfortable.

Sometimes you feel better than others, look after yourself, eat well & get plenty of rest. Online forums are a good support, you can see how other people manage their symptoms.

Hope all of this helps, I’ll post more if I think of anything else. Feel free to ask any questions. 💐

Thanks @RubyRubyRuby321

I think if this were once a year or so it would be tolerable but so far it's constant (and not just sores I can constantly feel it in my body in the way I think some people describe prodromes but for me it's always)

I quite literally cannot cope with a life like this. My partner has been amazing, my friends are kind, but I can't. It has to get better or I have to go to Switzerland.

So I guess my q is - do you think about this infrequently and it's just a now and then treatment situation or are you still constantly aware of this condition every single day (most minutes of that day)?

Sorry for a depressing q and thanks for your time.

As above. Also, as well as taking the Acyclovir - continue to take them until you've been clear for a couple of weeks - try taking an antihistamine. Herpes can make you feel like the walking dead and an antihistamine might help with associated itching etc. It may not but is worth a try. I've been taking Acyclovir for over 20 years, you won't come to harm from it.

Thanks @newnamethanks when I took antivirals before it never cleared up. I've had skin lesions every day since December. I might as well have been taking tictacs. I take antihistamines and I Def think that reduces my general uticaria but it doesn't stop the spots and scabs.

The first few months are awful. I was on a maintenance dose of aciclovir for a couple of years after I first got it, with sporadic bad outbreaks, but discovered the unpleasant tasting, but incredible, olive leaf extract. I haven't taken anything for several years now and have had one mild outbreak in that time.

Thanks @Montgomerystubercles which make of olive leaf did you pick? I take one from Amazon but maybe should try another.

I know it probably is a waiting game (if I'm lucky). I can't believe I've screwed up the rest of my 40s like this.

OP I‘m so sorry ;( I agree with you that people having unprotected sex are absolutely mad. How did you get this? Did the person who passed this on not disclose to you? So sorry Xx

When I was first diagnosed, I was very poorly with it for a fair while (weeks) and still just into my 20s so I was despairing.

However, after so many years, it’s like an annoying relative that you put up with every so often.🫤
The main goal for you is to get it under control, it sounds as if you are
repeat-infecting and you are in a cycle that needs breaking.

When you have taken antivirals, how long did you take them for? As some previous posters have said, they take theirs daily infinitum. You may need to start with the mega-blast of 4/5 doses per day… that is really the only thing that kicks it out. Then continue with the lower daily dose ( but only once you are clear of sores)

To answer your question, I am always being aware of new outbreaks, as the quicker you start actively treating, the easier it is to control it and get rid of it. I get little warning signs, tiredness, sore skin round the groin and abdomen, sometimes lower legs, mostly thighs. I know immediately what’s on its way! I do think about it 24/7 when I have an outbreak, but self are is your friend. Nothing physically demanding, def no tight clothes, pjs, knickers etc. Keep your painkillers and antivirals absolutely regular, use hot water bottles and rest, rest, rest. If you don’t have a bath, use the shower spray to put hot water on your sore muscles followed by a heat rub, it’s very comforting.

Hooe this thread with us all chipping in is helping, OP.x

It’s definitely not a minor thing. I don’t know one single person who claims it’s minor. Everyone I know with it seem incredibly uncomfortable.

@thebestinterest

Crikey, I’d never downplay it, it’s spoilt so many days for me over the last 40+ years!!

Its much better to talk about it on forums like MNet, and swap ideas and tips.

Birch polypore tincture

Hey @thebestinterest unfortunately condoms don't prevent spread and most people don't know they have it (but you can be infectious without symptoms - CDC suggests most transmission is from those without symptoms). So, the only way to avoid it reliably is to remaining a virgin.

Tbqh a deal I'd consider right now.

Talking about it is really helping @RubyRubyRuby321 and I'm so grateful to you guys for sharing your experiences.

I do not think I can handle a life of this, though. Once every ten years or whatever sure but this is awful. I was hopeful but by this point my body clearly isn't able to cope with it as some can.

Fuck.

I was taking 3g a day for a while (valacivlovir) but still not a blind bit of difference.

Thanks @SwordToFlamethrower does this help you?

OP I really sympathise, I have HSV1 orally, had it since I was a toddler and like you my immune system just doesn't seem to deal with it. Antivirals do help me so I am lucky with that.

Can I recommend an American site, Westover Heights. It is run by a nurse who is a specialist in STI's and HSV in particular. She can give great advice and might be able to help.

Good luck.

I think you deserve and need two weeks off work somewhere sunny - that's my prescription!

Lysine and arginine compete against each other, so while it’s beneficial to take lysine, it can also be helpful to cut back on foods high in arginine, typically milk chocolate and nuts.

I take daily dose of antiviral twice a day. It really helps me and I've been doing it for under 2 years.

I have every sympathy OP, it’s absolutely rotten and I remember feeling thoroughly miserable for the first few months after infection. I even got signed off work for 3 weeks because walking was absolute agony.
Like you I didn’t have much luck with the antivirals (but defo worth another shot at them if you can). After many years of outbreaks these are my golden rules:

Daily cool baths / showers and drying with a soft clean towel
Large seamless (very important!!) pants, which prevent your skin rubbing against itself and causing friction
*avoiding walking long distances (again, avoiding friction)
*As pp have said - rest! Give your body every opportunity to fight the virus with lots of sleep and avoiding stressful situations (where possible)

I know it doesn’t feel like it now, but your body will start to manage the virus and the outbreaks will become much more manageable… and one day you’ll realise you haven’t even thought about herpes for weeks! Hurrah!

I'm actually on holiday just now @Unexpectedlysinglemum and think this is what has broken my resolve this week. I can't just relax and last time I was here I thought I was healthy. Remembering old me is so sad. Period just finished and three or four new sores and I am wondering if I made things worse for myself with the wine I had last night. Travel seems to stress me out too - the flickers of pain in the backs of my thighs are starting to become a getting on a plane feeling.

I did bring emergency antivirals in case something terrible happened so going to have one tonight and see if it helps.

Have you considered trying something to stop your periods just in case they are a trigger and stopping them could help break the cycle?

I have been thinking about it but I know some people have found it makes things even worse so I've been anxious about that. I guess it makes sense to try since I feel this link fairly clearly

With the antivirals, one won’t help unfortunately. Can you take the whole supply? You need to be taking around 600mg per day as suppression. For the past two years I only take 200mg in the morning and 200mg at night and that is enough for me. Now and again I get the tingle or the tell tale ache in my thigh so I up my dosage and take an extra 200mg around lunchtime too for a few days until the aching goes away.
When you were taking the antivirals were you taking enough of them per day? Any less than that and they don’t work unfortunately. I really hope the pain eases and you can enjoy your holiday. Don’t worry about the wine- in my experience it didn’t matter what I cut out, the attacks were as bad whatever I did.

I was taking valacivlovir (the slower release ones) for several weeks. The standard dose is 500mg morning and night during an outbreak and I was taking 3g for most of the time I was on it. My doctor told me to stop and honestly it was a relief - it was messing with my head. I have been hoping my immune system would pick up since then and maybe start suppression.

Perhaps it could still happen😞