Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be absolutely over life with genital herpes

163 replies

ChristmasGutPunch · 20/03/2024 14:26

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.

OP posts:
ChristmasGutPunch · 20/03/2024 21:19

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.

OP posts:
SwordToFlamethrower · 20/03/2024 21:12

Birch polypore tincture

RubyRubyRuby321 · 20/03/2024 21:03

@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.

thebestinterest · 20/03/2024 20:59

StrawberryTwister · 20/03/2024 14:41

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.

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.

RubyRubyRuby321 · 20/03/2024 20:58

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

thebestinterest · 20/03/2024 20:57

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

ChristmasGutPunch · 20/03/2024 20:53

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 posts:
Montgomerystubercles · 20/03/2024 20:50

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.

ChristmasGutPunch · 20/03/2024 20:49

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.

OP posts:
newnamethanks · 20/03/2024 20:43

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.

ChristmasGutPunch · 20/03/2024 20:38

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.

OP posts:
RubyRubyRuby321 · 20/03/2024 20:35

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. 💐

Mountainclimber50 · 20/03/2024 20:23

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

When was your exposure?

tolerable · 20/03/2024 20:16

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

Rockfordpeach · 20/03/2024 20:12

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

neilyoungismyhero · 20/03/2024 20:06

I'd echo the cold sore remedy.

ChristmasGutPunch · 20/03/2024 20:04

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.

OP posts:
Unexpectedlysinglemum · 20/03/2024 19:59

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?

ChristmasGutPunch · 20/03/2024 19:59

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.

OP posts:
toddlermom1 · 20/03/2024 19:53

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.

buswankerz · 20/03/2024 19:41

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.

ChristmasGutPunch · 20/03/2024 19:40

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.

OP posts:
ChristmasGutPunch · 20/03/2024 19:38

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 :(

OP posts:
buswankerz · 20/03/2024 19:35

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

Crowgirl · 20/03/2024 19:31

Boopeedoop · 20/03/2024 16:31

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

Also salt baths may be soothing?

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.

Swipe left for the next trending thread