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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.

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MushMonster · 13/11/2025 17:20

Can they retest you for which virus is causing this? Maybe the test came back with the wrong one, or you have more than one strain/ variant. Your case may be more responsive to other medication.
If you can afford the private tests, I would go for it. Long waits for GUM sounds plain stupid to me. I did not know that the NHS is running on fumes on that department too.

OneSnugKhakiPanda · 13/11/2025 16:51

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ChristmasGutPunch · 27/03/2024 10:47

shorttwoshot · 27/03/2024 10:37

I take them long term, it's been around 7 years now. I've tried to come off them a few times but it just flares up. The only way I've been able to keep it under control is with long term antivirals. Not ideal but better than the constant flares x

Totally agree. I've heard of some people coming off them, having an initial flare and then being ok after that but I am guessing if I am in this hyper reactive state at the moment that is optimistic thinking.

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shorttwoshot · 27/03/2024 10:37

ChristmasGutPunch · 27/03/2024 09:32

Thanks @shorttwoshot it is reassuring to know it's not just me. Are you off the antivirals now or do you take them long term?

I take them long term, it's been around 7 years now. I've tried to come off them a few times but it just flares up. The only way I've been able to keep it under control is with long term antivirals. Not ideal but better than the constant flares x

ChristmasGutPunch · 27/03/2024 09:32

Thanks @shorttwoshot it is reassuring to know it's not just me. Are you off the antivirals now or do you take them long term?

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shorttwoshot · 27/03/2024 09:23

I posted earlier up thread about suppression therapy helping me. I just came back to reassure you that I was the same as you for the first year or so. Constantly in pain with it, only maybe short periods of relief. But I stuck with the antivirals and eventually it settled down. It still comes back, for example if I'm unwell etc. But I get many more days of no symptoms now than I do the bad days.

I just wanted to say that it does take time, it was ages for me....but eventually it settled down. I have an overactive immune system which probably explains why I suffered so much compared to the textbook response of people feeling better after a few days of antivirals. Sounds like you're similar Sad

IncognitoMam · 26/03/2024 13:06

@ChristmasGutPunch glad you're not in too much pain.

ChristmasGutPunch · 26/03/2024 11:49

Thanks. It's not the pain that bothers me (they're not actually that sore) it's the fact that I'm constantly infectious and my body is struggling to control it. I'm on day whatever this is now or antivirals and really hope the spots die down.

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IncognitoMam · 26/03/2024 09:29

There's a 10% one too.

IncognitoMam · 26/03/2024 09:29

Here

To be absolutely over life with genital herpes
IncognitoMam · 26/03/2024 09:27

ChristmasGutPunch · 25/03/2024 22:19

Thanks, I appreciate it. I would just really like it my nerves could stop hurting. Cannot believe how suddenly I've gone from healthy to this basketcase.

Did you try the lidocaine?

ChristmasGutPunch · 25/03/2024 22:19

Thanks, I appreciate it. I would just really like it my nerves could stop hurting. Cannot believe how suddenly I've gone from healthy to this basketcase.

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ADHDGURL · 23/03/2024 16:19

Hi OP.. I'm sorry ots been so rough.. I got them 15 years ago from an unfaithful partner.. my symptoms were horrible, but I used Olive Leaf Extract (solgar do a very good one) ots a natural antiviral recommended to me by a nutritionist when I had shingles.. if you have already tried ignore me but they lessened the duration and recovery was shorter.
Hope this helps 🙏

ChristmasGutPunch · 23/03/2024 11:31

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.

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totallybonafido · 23/03/2024 11:01

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💐

ChristmasGutPunch · 23/03/2024 10:51

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

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Iwasafool · 23/03/2024 10:44

ChristmasGutPunch · 23/03/2024 10:41

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.

ChristmasGutPunch · 23/03/2024 10:41

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?

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Iwasafool · 23/03/2024 09:56

ChristmasGutPunch · 21/03/2024 23:19

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.

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.

Iwasafool · 23/03/2024 09:53

behindher · 21/03/2024 23:09

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!

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.

ChristmasGutPunch · 21/03/2024 23:19

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.

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behindher · 21/03/2024 23:14

thebestinterest · 20/03/2024 20:59

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.

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 😤

behindher · 21/03/2024 23:09

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!

voxnihili · 21/03/2024 23:05

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.

ChristmasGutPunch · 21/03/2024 21:41

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

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