To be absolutely over life with genital herpes

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

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.

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.

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.

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

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.

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.

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

Menopause triggered my first outbreak as well. It was horrendous as I thought it was lichen sclerosis. Drs prescribed instillgel which numbed it a bit and I had to take myself off HRT for a while.

Still get the tingling but taking Aclovir daily to prevent any outbreaks.

Stress seems to be my main trigger.

Nuts and tiredness are my triggers if I don't have nuts I really don't have outbreaks. Menopause triggered my first outbreak and I think HRT really helped lessen the pain before I worked out my triggers. Happily married ten years when I had my first outbreak it was so humiliating, now I just think of them as coldsores.

Oh op. I don't have experience with hsv1 but I have something called interstitial cystitis and have done for about 15 years now. Like herpes there are flares and then periods of 'remission?' if that's what it's called.

Thank God mine isn't so severe now but in the early days I was suicidal, I was begging to have my bladder removed but was told even if I did that I could still get phantom pain as my body was so used to it. When I get a flare now I know how to quickly get on top of symptoms, but it still fills me with dread, I still get depressed about it even now.

Living with chronic pain especially when it's invisible to other people and something quite personal that you don't want to broadcast is miserable.

But I honestly believe you will Get through this tough flare and improve drastically, this is not how your life is going to be forevermore so please keep going to the doctors and keep throwing everything you can at it.

Read the SADBE group on Reddit. It has cut down outbreaks exponentially for a lot of people.

When my boyfriend (now hubby) first gave me this I was so angry - and I got them all the time and thought about them all the time.

I can’t remember who, but someone told me I had to accept them into my life. And when I did they stopped. I now may getting a tinkling once every few years and actual solitary sore once every five years.

There are medications for nerve pain that are very different from conventional pain medications. Certain antidepressants and specific epilepsy medications along with a few others. It might be worth speaking to your GP about the nerve pain specifically. If you mean what I think by the flashes that's nerve related just like the sciatica. As is the sciatica. I dont know about the UK, but here the first medication trialed for nerve pain here is often low dose amitriptyline which can have the for some useful side effect of helping you sleep.

No advice here but total sympathy- as a chronic severe eczema sufferer and regular oral herpes outbreaks, I know how painful and frustrating these kinds of things can be, and even then I can only imagine how it must feel for you personally. I'm glad you've had some great responses, it can feel so isolating when people underestimate how skin conditions affect everything from physical pain to emotional wellbeing and the loss of confidence. I hope some of the advice from others helps to get your symptoms under control

I don’t have experience of this but your title drew me in because I have vulval eczema which is another really miserable affliction that wears you down. Any little movement can result in my skin tearing, just in every day life. So it’s definitely a passion killer in terms of anticipating pain, and psychologically not being able to relax because of that.

I console myself that hopefully in my lifetime a better treatment or cure will be developed.

Don’t feel you’re being a nuisance by going back to your GP if the meds are doing nothing for you. I should probably take my own advice on that one and get referred back to my dermatologist!

I second the PPs suggestion for blood tests. If you’re low on things like iron and even vitamin D your body may be run down and struggling to kick this virus into touch.

Really hope you have an improvement soon.

I'm not sure if anyone has mentioned Vit d - are your levels low (do you get lots of sun in the daytime .. because if not - I'd try taking about 5,ooo units a day.

There is a bit of research suggesting that low vit d levels - result in longer healing times.

Have you had a blood test? If my folate or iron levels are low I'm a lot more prone to flare ups.

Also avoid any irritants down below, as they make everything worse. That can include sweat so if you're mid flare up change your underwear a few times a day. Avoid any form of scented loo roll.
I've found that gallinee unscented cleansing bar is the best thing to wash with as it doesn't cause irritation.

Apologies if this is left field but might be worth trying as you are suffering so much.

Have you tried boosting your immune system at all? When I was suffering a number of long standing general illnesses (ME/fibro type symptoms though not severe).
I took a load of supplements B complex/C/magnesium/zinc/folate/omegas and after about a month the veruccas I'd had for decades went away. I know it's a different virus but might be worth a try?

Acilivoir. Use twice daily. It protects against them coming back at all and prevents transmission. And with an outbreak (5 as day!) makes them go away faster