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.

I’m so sorry to hear it. I’ve not tried valaciclovir, I have only taken Aciclovir. There used to be a Herpes helpline (maybe still is) might be worth getting in touch with them. They were so helpful to me on my bad days.

@Harassedmum123

i agree with your comments about dosage, it has to be high enough and relentless enough to fight the virus and you can very often keep it from becoming a full-blown outbreak if you follow this.

@PotatoCatkin

Good point about periods!

I cocked up my HRT a while back and that seems to have brought on an outbreak. Luckily, the antivirals warded off a bad one and it was gone within the week.

Exactly @RubyRubyRuby321 it’s not so much about dosage but about taking them at regular intervals. Apparently the virus starts to resurface again after only 12 hours so you need to be taking them at say 8am, 2pm, 8pm for example. Once a day isn’t enough to keep it at bay.

As you haven't got a bath.
Consider a paddling pool in the shower or a bidet bowl on the toilet to use with the Epsom salts.

At my max I was taking one every 3 hours or so with no noticeable effect

I was terrified I must also have HIV or something because this doesn't seem to be an issue for anyone else I've read about online

I think they are just not that helpful for some people

Please God let time be my cure (and not too much more of it)

Would a topical numbing cream help? Like Emla cream? I know it won’t cure it but I might give you a break from the pain and discomfort

I think I previously had capsules but read that the liquid was more effective so have used this for the last few years. I really hope it helps you, it is so awful and not something you can have a whinge about to friends when it is awful as it's so socially stigmatised as well. It will get better, just hang in there.

Thanks so much @Montgomerystubercles I'm going to buy this when I get home!

Oh that's true, a doctor friend suggested lanocaine cream which is a local anaesthetic, for when it's really bad.

I feel your pain literally!
I am someone who has suffered with HSV type 1 also. Had my first flare up about 4 years ago and continued to be a problem. I got pregnant and my pregnancy I had herpes the entire 9 months and Drs wouldn't prescribe me antivirals until last stages of my pregnancy. They too couldn't understand how I had it all the freaking time! In the end I opted for everyday antivirals. Although they did really work for me and at least took the pain away. Maybe try different antiviral as there is a few out there! Once cleared up after pregnancy I took one a day for a year and then stopped. Now I only get breakouts occasionally and start taking the antivirals as soon as I feel any sort of itch or shooty leg pains etc and touch wood I've not had a problem.
However I know it's far from ideal.
Things that make mine worse or breakout:
Being tired / not getting enough rest
Being stressed
Sex
Wearing tight clothing
Thrush ( using thrush cream made even worse)
I'm 4 years in now and things are so much better I barely think about it. My advice would be keep trying the antivirals and stay on them long term for at least a year before coming off them!
Good luck

Oh I also find Nothing topical works only makes it worse!!
I tried- sudocrem, Vaseline, lidocaine cream (numbing cream) nothing really works. My advice is keep the area clean and dry and salt water baths as much as possible! Also I put sanitary pads in the freezer them put them in my pants. (Haven't had to do that for years) but please know it will get better

On topical things, I have found lomaherpan good but that doesn't really solve the fundamental problem of constant, relentless new infection. It's like my body is totally sick inside and the sores are just one sign of that.

And the restrictions on intimacy are so horrible. Sex as a trigger is like a torture. If I knew I wouldn't pass it on id just take the sick feeling but :( feels like being a prisoner in my body and I'm so scared about what it will mean for my relationship in the future.

Why do they say hsv1 is the easy one??? It just means the vaccines being researched at the moment won't be available for us :( :(

I want my old body back so badly.

I really appreciate all of your ideas. Going to restart antivirals, tearfully beg for an appointment to discuss it with a doctor, get hold of the olive leaf drink and hope really hard that the next period is easier than this one.

@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.

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

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?

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.

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.

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.

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

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.

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.

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

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.

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.

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.