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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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:
Original poster
ChristmasGutPunch · 21/03/2024 08:01

Well I took a valacivlovir last night and woke up with a migraine this morning why is the body such a massive pita!!! Christ. Going to try to maximise sunshine today in hope that vitamin D is indeed the key. Once again astounded to consider that 80% or so of people who have this have NO IDEA.

OP posts:
Shiningout · 21/03/2024 08:04

ChristmasGutPunch · 21/03/2024 08:01

Well I took a valacivlovir last night and woke up with a migraine this morning why is the body such a massive pita!!! Christ. Going to try to maximise sunshine today in hope that vitamin D is indeed the key. Once again astounded to consider that 80% or so of people who have this have NO IDEA.

I do find that once you're run down with one thing your body just gets everything, I always get utis when I'm stressed, and I also get inflammation in the joints of my hands for some bizarre reason. It's a vicious circle

MrsPelligrinoPetrichor · 21/03/2024 08:07

Boopeedoop · 20/03/2024 16:31

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

Also salt baths may be soothing?

I second this, Dh really suffers with cold sores and has taken Lysine for the last 2 years and hasn't had one. Really worth trying.

Edited - sorry I read back and you've tried this already.

Newname927 · 21/03/2024 08:19

Apologies if you have tried this but have you been thoroughly checked over to check you're not immunocompromised? Equally have you tried therapy to help with the psychological impact of what you're dealing with? Stress is a trigger for herpes (as I'm sure you're acutely aware) so perhaps attacking it from that side might help?

It sounds absolutely miserable though and I really wish you a speedy recovery from it.

MrsPelligrinoPetrichor · 21/03/2024 08:23

Really hope you find something that helps, definitely get back on the anti viral asap. 💐

Original poster
ChristmasGutPunch · 21/03/2024 10:11

I really really wish we could just "go to a gynaecologist" like they seem to be able to in other countries. I want a hands on MOT, not a phone assessment! I've had a look at Nuffield etc but that all seems to be based around specific conditions and I don't think you can just book a checkup (although if anyone knows of this I'd be really grateful for a recommendation).

I would like a sensible doc to take a look, advise me on the obvious main life ruiner situation and then maybe a tip for my haemorrhoids etc etc. Are my standards too high to wish for some security in this area??

Currently wondering if I could work a private gynae visit into the holiday but the prospect of having to involve Google translate is off-putting.

OP posts:
doodlepants · 21/03/2024 10:33

I think any ongoing health condition which complicates your life is very stressful and mentally draining, even if the symptoms are seemingly harmless (and I mean in the sense that they are not painful or life threatening, more agitating). I have long term eczema (now under control) but I cannot tell you the mental strain of being constantly itchy. A friend of mine has joint pain and he is always in pain just a little bit and it's mentally exhausting to continue life with something constantly wearing down on you.

All this to acknowledge that what you are going through is hard and exhausting. Take care.

newnamethanks · 21/03/2024 12:08

My GP referred me to the local STI clinic, she said they have the most specialised knowledge about herpes whether sexually transmitted or not. So they're self-referral I think? Put any embarrassment away and go to one. And, OP, if its not been mentioned upthread, take the antivirals until you think you're clear then take same dosage for another 2 weeks. You have to batter the damned virus down and don't give it a chance to keep on replicating. If you get a breakout, start meds again. Don't suffer unnecessarily. Take the meds.

99cats · 21/03/2024 12:19

I’m really surprised this is just type 1, the cold sore virus, as almost 70% of us have that. Sounds much more like type 2. Most type one is caused by oral sex with someone that has a cold sore. So sorry to hear you’re having such an awful time. I would agree with others, that I would persist and keep returning to the GUM clinic.

Original poster
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)

OP posts:
Original poster
ChristmasGutPunch · 21/03/2024 12:56

It's definitely type 1 - I never had it as a kid so I guess maybe it's like when you get chickenpox as an adult. I.e. brutal.

OP posts:
positive37 · 21/03/2024 12:59

Can you try antivirals for a whole year? I had this and it helped massively!

Original poster
ChristmasGutPunch · 21/03/2024 13:08

I would totally do it if it would actually help @positive37

How long did it take for yours to go away? (By which I mean even a day without symptoms at this point!)

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?

Original poster
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:
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...

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.

Original poster
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:
Original poster
ChristmasGutPunch · 21/03/2024 14:18

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

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

Did they swab the lesions and diagnose type 1 HSV?

Original poster
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:
Original poster
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:
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?

Original poster
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:
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.