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.

@ChristmasGutPunch I was getting an outbreak every week so I feel your pain. Now I only get one every few months and they're a lot milder. Such a pain though. I wish there was a cure!

Thanks @IncognitoMam I appreciate it. I hope I end up a no flare ups person :(

It really is @positive37

Hope your symptoms decrease further with more time

I take L Lysine every other day, they haven't come back since and were horrific before that. Can your partner have the HPV jab ?

Haven’t got time to read whole thread. Please try YS Eco Bee Propolis. I had the same issue as you. I was desperate. I found this recommendation on a fb group. It has prevented it coming back. It worked. Please give it a go honestly I was sceptical at first but so glad I got some

@ChristmasGutPunch - have you tried antihystamine?
i think ibupofren too.
check your toilet paper isnt add to inflamation.....i thot was herpes but turned out to be irritant by "bamboo"toilet paper..(thankyou lockdown).seem to be im super sensitive or theyve changed manufacture contents ...stupid fragrance\alo e all cause me hell. ...

Thanks both. Ordering propolis and actually do take ibuprofen and antihistamines but might extend. They really help me with postmenstrual migraines so perhaps the inflammation is all linked.

I hope so too 🙏🤞

You could try Monolaurin, I take it occasionally to boost my immune system ( I took it every day during the pandemic)
I've seen quite a few reports of it being effective against herpes and other viruses.

Cannot stress enough how much propolis saved me. I got hsv1 then would get outbreaks maybe 1 every year. That was until I got a new job that was stressful beyond belief. I then got an attack that went on and on for months. GP was useless. I searched fb and that’s where I found that recommendation. I’ve been taking it for 6 years and maybe had 2-3 outbreaks, at least one was due to fact I had run out of propolis. I take one a day religiously. I’ve only ever used the YS eco one.

Thanks again. Do you get it online?

Yes just google it a few places stock it

Yes it's the strangest thing! I also get weird burning type pains around my buttocks legs and feet which is what I imagine shingles to feel like! Usually my first sign of knowing an outbreak is on the way.

It is like a flipping alien invasion. I hate hate hate that there is no proper treatment.

I am about 15 years in and still get regular outbreaks - about 6 per year. Luckily only one sore in the same place and it responds well to aciclovir. I keep meaning to take it as a suppressive as I have a really stressful job and I don’t think it helps.

Whilst my outbreaks are fairly mild, they’re frequent enough to be really annoying. It’s every few months. I have a copper coil and a sure they’ve been more frequent since that. My first outbreak was awful though - I didn’t actually have any sores but developed meningitis as a result of the infection and spent some time in hospital.

Hope you find something that helps soon - it’s awful.

I have HSV1 (on the mouth area which is supposedly worse for that type)
and kept suffering flare ups. Lysine supplement and a multivitamin have really seemed to help. And getting enough sleep!

Well statistically for most people it IS minor (80% of people with genital herpes don’t even realise they have it and are undiagnosed! They don’t screen for it either.) But that makes it worse for us unlucky ones with cold sores/genital herpes who are suffering. Especially when all the undiagnosed and unaware people are probably doing most of the spreading it round 😤

Absolutely @behindher - hard to imagine spreading it when feeling this terrible! Guy who gave it to me was genuinely shocked (and is still happily womanising away as I understand it - can't imagine he tells his lucky new friends).

I'm sorry to hear you're still having it so often @voxnihili - if antivirals work for you episodically it sounds like they might also be great for suppression.

WHY DONT ANTIVIRALS WORK FOR ME WHY AM I A FREAK!!!!!

Have just bought some propolis so will see if that helps at all.

The only thing that drastically reduced outbreaks for me was the menopause. So much negativity about the menopause but for me it meant cold sores went from an outbreak almost every month to once every couple of years. Even better result for migraines. I bloody love being post menopause.

My cold sores got really bad, instead of just round the mouth I was getting them up my nose (which still happens occasionally) but I once got them in my mouth. My doctor and dentist both said that wasn't possible until they saw them. The only painkiller that worked for me was amitriptyline which was fantastic, for me the side effect was it made me sleepy but to be honest after all the pain and lack of sleep it was wonderful to have a straight ten hours.

I hope you find something that works for you.

Thanks @Iwasafool

It's sort of annoying how confident healthcare providers can be when it's pretty clear this thing is very different for different people

Did you find things died down again?

Yes it did settle. I had just lost my mum, one of my kids was waiting for quite a big operation, I was working but also carer for my disabled husband. Herpes is evil in that it attacks when you are at your lowest so rest and good diet helps as does no stress but we can't always manage to eliminate stress can we.

You're right @Iwasafool it's completely horrible. I'm glad it had improved for you now.

So sorry to hear this OP, I remember my early days with GH and it was miserable. I think generally the symptoms do reduce and become less frequent over time for most people, I've had it for over 20 years now but I can't remember my last outbreak and I've been having unprotected sex with DH for about 8 years without him getting it. This doesn't help you right now, but I hope that this gives you hope💐

Thanks @totallybonafido

Wish I could go a day without my body feeling it! Well, longer than a day obviously but it just feels ridiculous and absolutely everyone says "oh herpes doesn't last that long it can't be that" but it really seems to be! It does give me hope that things will improve, though, thank you.