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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.

OP posts:
singlemum93 · 21/03/2024 21:30

RubyRubyRuby321 · 20/03/2024 23:45

@singlemum93

Your description of
“shooty leg pains” is really spot on! The other description I read on a forum of “heavy dead leg pain” was also accurate.
I have had pain and tender patches on my lower stomach and round my waistline in past outbreaks.

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.

changedagain67543 · 21/03/2024 21:21

Yes just google it a few places stock it

ChristmasGutPunch · 21/03/2024 20:22

Thanks again. Do you get it online?

OP posts:
changedagain67543 · 21/03/2024 19:31

ChristmasGutPunch · 21/03/2024 18:53

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.

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.

Morethan4hourssleep · 21/03/2024 19:09

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.

IncognitoMam · 21/03/2024 18:57

ChristmasGutPunch · 21/03/2024 17:16

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

I hope so too 🙏🤞

ChristmasGutPunch · 21/03/2024 18:53

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.

OP posts:
tolerable · 21/03/2024 18:51

@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. ...

changedagain67543 · 21/03/2024 18:26

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

XMissPlacedX · 21/03/2024 18:05

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 ?

ChristmasGutPunch · 21/03/2024 17:16

It really is @positive37

Hope your symptoms decrease further with more time

OP posts:
ChristmasGutPunch · 21/03/2024 17:16

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

OP posts:
positive37 · 21/03/2024 16:50

@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!

IncognitoMam · 21/03/2024 16:29

@ChristmasGutPunch have you tried lidocaine on the sores? I know someone who had it bad (sciatica too but didn't know that was connected?) He doesn't get to flare ups now but when he did he put lidocaine on. I've just asked him about it for you as he's been very open about herpes.

I really hope you get some help soon.

ChristmasGutPunch · 21/03/2024 14:40

Thanks, I'll try. But yeah the problem isn't so much healing one lot as hoping new ones stop growing every few days. Which does seem to be about as unusual as I'd feared.

OP posts:
alpinia · 21/03/2024 14:38

ChristmasGutPunch · 21/03/2024 14:18

That's interesting @alpinia - did you find it had a lasting effect?

I found it very helpful, but while I've had repeat outbreaks I haven't had it ongoing for months so I wouldn't know about a long term effect like that. They use it for wounds that struggle to heal so it does make sense.

It's not very expensive to buy (though mine was on prescription) so might be worth a try?

ChristmasGutPunch · 21/03/2024 14:30

I mean I'm open to possibility of it being something else but what could possibly be causing the nerve symptoms!

OP posts:
ChristmasGutPunch · 21/03/2024 14:29

Mountainclimber50 · 21/03/2024 14:19

Did they swab the lesions and diagnose type 1 HSV?

Yes. I've also had a blood test (which I know are famously unreliable but) it showed hsv1 and no hsv2

OP posts:
Mountainclimber50 · 21/03/2024 14:19

Did they swab the lesions and diagnose type 1 HSV?

ChristmasGutPunch · 21/03/2024 14:18

That's interesting @alpinia - did you find it had a lasting effect?

OP posts:
ChristmasGutPunch · 21/03/2024 14:17

You know how it is with things that don't fit a usual diagnostic box @Foxblue I don't think there's anything else it could be because it's so closely linked with all the internal sensations. If I didn't have the nerve pain I'd think it could be folliculitis (my sores tend to look more like that than like standard scabbing blisters) but I don't think anything else can cause the nerve stuff - it seems totally classic herpes. Sometimes I feel a zap in my leg and when I look there's a new spot right there.

I could live with it tbh if not for the constant infectiousness. It's horrible.

OP posts:
alpinia · 21/03/2024 14:13

A colleague has type 1 she contracted as a baby on her face and it basically has never gone away. She didn't get it under control until months of antivirals.

I have had shingles repeatedly which is a bit similar. The only think I found that took the sting out was medical grade manuka honey. Bit sticky to paste on your nethers but worth a try? Mine was on my face so also not easy to use there. They've put it in to the standard treatment plan at my local doctors now as a few people had success with it.

Foxblue · 21/03/2024 14:03

God, that's horrendous. When they swabbed you initially, did they comment on anything being unusual? Like, the fact its so treatment resistant almost makes you wonder if it's something else? Especially as its HSV1.
I feel awful for you OP. Hopefully you can get hold of somebody sympathetic...

ChristmasGutPunch · 21/03/2024 13:31

Hi @YetMoreNewBeginnings I have tried acyclovir, famciclovir and then for the longer periods valacivlovir. Absolutely nothing touched it. Feel like a freak or some sort of sullen teen insisting nothing works but nothing does! It's scary to feel out on this limb. I would feel better (a bit) if there were any guidance that said "some people will have it constantly for a few months but then it will die down" but the disease is described as self limiting and everyone I know who has it looks really alarmed at my uncurtailed situation.

OP posts:
YetMoreNewBeginnings · 21/03/2024 13:17

ChristmasGutPunch · 21/03/2024 12:55

Re the meds - I can't emphasise enough that they did NOTHING. I was necking them at three times the recommended initial outbreak dosage for a while. Took them for weeks. The sores and pains never stopped. Even the fever and exhaustion just took its own sweet time. I am so so so so jealous of the people for whom they seem to kick in and just stop it. I have noted the experiences above that suggest for some people you just need to keep taking them and have faith they'll eventually start working tho. The NHS basically treats people who the meds don't work for as though we don't exist.

(I self referred to our local gum clinic and it's very very hard to see anyone there in person but I think I'm going to beg them tearfully when I get back)

Did they try you on different antivirals at any point?

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