GHSV-1 diagnosis, would like to hear about others' experiences

Hi,

I am a 24 year old woman and I was recently diagnosed with GHSV-1. It came as quite a shock, I thought I was suffering from the mother of all UTIs but when the doc had a look she was able to identify it pretty much straight away (got culture tests done to confirm). I know for a fact I caught it from my boyfriend of 2 years as I had a full STI test including herpes done in January which came back clear - thought I was safe from anything.. My boyfriend gets cold sores from time to time (only 2 since we've been together) and I was always OBSESSIVELY careful not to touch his mouth while he had one. Of course I did not know, nor did he, about asymptomatic shedding (although if I had I don't think that would have made us abstain from oral sex so I suppose this was probably inevitable..) Anyway, as my first OB faded I felt ok, I hoped I'd be one of those people who never had another one and while I'm with my HSV-1+ partner could just get on with life. 2 weeks after my first OB subsided we tried having sex and it went great for about 5 minutes before I started to really hurt and had to stop. I felt a little prickly pain all the next day and was sure I was due another OB but it didn't develop into anything. Then 3 days ago we tried again and it went much better so I was very happy with that, but as the day went on I noticed a pain on the bottom of my butt cheek, a spot that was impossible for me to see. Finally I got a hold of a handheld mirror to have a look and lo and behold, an ulcer. Now my first OB never looked like blisters, they were just painful little red bumps in my genital/anal area which never grew pus or scabs. But this one looks like a popped blister, yellowy and about the size of a penny. I've had it for 3 days now. I'm getting quite upset about it - for one thing was it there when my bf and I had sex and did I put him at risk? And then there's the fact that we're going abroad next week for our anniversary, we've been planning the trip for ages and not having any sex was not part of the plan.. I rang my doctor to ask for a Valtrex prescription and they said to ring back tomorrow as they weren't sure whether they could prescribe it without me coming in and presenting symptoms (I can't afford to take time off work with my holiday next week) I'm worried that the 3 day window to take the Valtrex will go and I'll be stuck like this for my holiday, feeling gross and unsexy.

Anyway, that was longer than I intended it to be, just really needed to share.

I would just like to ask about other people's experiences with GHSV-1, I know everyone is different but am I being too optimistic hoping I won't get many more OBs? My boyfriend and I live in different cities and don't get to see each other enough as it is so having this extra obstacle is a real bummer.

Also, I know this gets asked all the time but I'd really like to know how likely I am to pass this onto him. It seems weird that I could pass it on at all since he gave it to me in the first place. He's gotten cold sores since he was a child (and has gone years without any at times) so does that mean his body has built up some pretty decent antibodies to it?

I'm trying my best to stay positive but I feel a bit like life keeps trying to kick me down. I struggled through glandular fever and all that comes with that for the best part of a year, then got a bad staph infection which caused chronic boils on my legs for a year and a half and I'd only just recovered from that for about 6 months before this came along. It feels like something keeps trying to attack me and my confidence and even though I managed to beat the other things this one will be with me forever :( Help and advice would be appreciated, if you've made it to the end of this essay.. Thanks!

Hi there @Ashh and welcome! You've stumbled onto an amazing community that has been invaluable to me since my diagnosis in June. I have GHSV1 as well and was diagnosed late June. I too have been in a two year relationship however my fiance has never had a cold sore nor have I. My IgG was positive as well as my culture so this is either something I've had since before him and I started dating or he unknowingly carries it and has just never had a cold sore. I got tested prior to our relationship but unfortunately didn't know at the time that HSV is not routinely tested for unless you ask for it, so there's no way for me to know for sure.

I'm sorry for all of the health issues you've been through in the past few years. The good news is that this one is totally manageable and *shouldn't* hopefully cause you too many issues. I struggled being terribly depressed over this initially and would cry all of the time, I wasn't myself at all I was very withdrawn from everyone, and I sought out the help of a therapist. I think one thing that has really helped me is my fiance's attitude towards it which is basically "so what?". If he would have freaked out or made me feel disgusting or bought into the stigma like most of society, I don't know that I could have coped with those reactions.

For GHSV1, it does tend to shed less and also cause less outbreaks than HSV2. That being said, everyone's body reacts differently to the virus. Some get one and never have another, some get them very infrequently, and others have them more regularly. Your GHSV1 may end up being very mild. In this initial phase, your body is still building up antibodies to fight the virus and thus it doesn't have it "in check" as well as it will once your immune response is at its fullest. Outbreaks are more common in the first year and tend to decrease over time.

As far as your boyfriend contracting it, while *possible*, the chances are pretty rare. If he's has HSV1 since he was a kid then his body would have the virus pretty well under control at this point and his antibodies should provide him a large amount of protection from contracting it genitally.

I'm guessing by the term "holiday" that you like in the UK? I ask because I know that here, in the US, we have the option to go on suppressive treatment which involves taking a small dose of an antiviral daily. This serves the purpose of decreasing transmission (which I don't think you have to worry about) and also helps prevent outbreaks. I had read somewhere that in the UK they typically won't prescribe the suppressive treatment unless you have many outbreaks and even then only short term (a year or so) but can't remember where I read that. If you do get more outbreaks, you could ask for suppressive treatment and see what the doctor says. Since diagnosis I've been taking suppressive valtrex and haven't had any outbreaks but I also haven't felt back to normal totally in my area either, I get those weird prickly feelings too much for my liking as I never know what to expect with them.

Hopefully your doctor will prescribe the valtrex when you call today! There are also things you can use to help dry the sore up. I think tea tree oil works, salt baths, and then a moderator on here used to recommend ammonium alum. I saw this mentioned multiple times in old posts. She stated it burned at first but helped dry the sores up very quickly. That could help speed healing for your holiday next week.

I really hope that you can get past this outbreak before your holiday so that you can fully enjoy it! Including intimate time with your boyfriend :) if you have any questions that I can help with don't hesitate to reach out to me!

@ash2018 - a fellow Ash and GHSV-1 carrier, we have so much in common! :P Thanks so much for your response, it's great to be able to talk to someone in the same situation. I've thought about telling one of my close friends but I just don't feel quite there yet.. Luckily, like yourself I have a very supportive partner, the only negative reaction he had was feeling guilty that he passed it onto me and sorry that he didn't know he was contagious when he didn't have any cold sores.. But he's been really great so that's one of the things keeping my mood up. I also watched Ella Dawson's Ted talk right after my diagnosis and that really made me go from feeling like the unluckiest person in the world back to someone normal with a minor skin problem that most of the world has. The hardest thing for me is the 'forever' of it and the stigma.. It kinda sucks that even though my boyfriend gave it to me he can tell everyone he likes that he gets the odd cold sore and no one will bat an eyelid whereas I'm scared of people learning that I have an STD. Hopefully soon enough the number of people who have this will encourage a change where we stop seeing it as an STD and start seeing as just cold sores in a different spot. Thank you also for your reassurances of the unlikelihood of me passing it back to him, I really hope that one day soon I can have sex without my head filled up with a chorus of 'you have herpes you have herpes'...

I live in Ireland, so close enough! And yes, suppressive therapy doesn't seem to be suggested as an offer here unless the problem is chronic.. My doctor faxed my script to a pharmacy today so I got my Valtrex for the next 5 days but it came with a note saying that I must go in for an appointment before they'll let me have any more. Which sucks because I hate taking time off work and a doctor's appointment is €60 on top of the €17.50 I have to pay for a course of Valtrex. Can I ask what it costs in the US to be on a low dosage long term? I certainly can't afford to be spending €17.50 on it every week.. Hopefully it'll clear this one spot I have up and I'll be clear for a while..

I guess it will take some time for me to learn when I'm getting symptoms, I tend to get little pimples on my butt and thighs in general so now whenever I spot one I'm like ahh herpes or not herpes?? Plus my doc told me as soon as I feel like I might be starting to get symptoms I should start the Valtrex as soon as possible but then they make it quite difficult for me to actually get a prescription, especially if it crops up on a weekend like this one AND my initial one both did.

Anyway thank you for your response, just knowing their are others going through the same thing as me right now and still happily living life makes me feel so much better!

:)

We do have a lot in common!

I think that here the cost honestly depends on your insurance. I know that acyclovir is cheaper as it was the first antiviral made. Valtrex is converted into acyclovir in your body, but more of it is absorbed and thus allows you to take the dosing less frequently so it can be preferred by many. With my insurance we have to use a mail order pharmacy for any prescriptions that aren't "one time meds", meaning if its something I'll be taking every day. I just looked and the 3 month supply I got back in August was $15. so not bad at all. I think I paid $7 or something similar when I picked up a month supply at the local pharmacy prior to getting the mail order script. I wish your doctor would give you a script to take on your holiday with you, just in case! I know that here even if you do episodic treatment most docs will give you a script for 5 days of valtrex to keep on hand so that you can self initiate the treatment as soon as you feel symptoms.

I totally get what you mean about not being able to tell when you have symptoms. I still probably don't but I *think* I may be figuring my body out. I've had some shave bumps and pimples on my butt since my outbreak and I've classified them as such based on prior experiences. My outbreak was clearly recognizable even though it wasn't very big, just 4 blisters, but it was painful and hurt to walk. I thought I had cut myself with my nails scratching. So I'm trying to live as normally and only pay attention to the odd feelings and if anything that was never "normal" for me before pops up. As for the feelings, I still get random prickly feelings sometimes but have no idea what they are/mean. I thought they could be from the valtrex. I think I have experience *real* prodrome for me though. I had two episodes where I had strong itching and irritation at the site where my outbreak was and no where else. I upped my valtrex for a few days and was okay.

So frustrating to not know for sure how your body will react nor be able to tell for sure what symptoms are! I've been just trying to learn my body and figure out what its telling me.

I am happily living life, but it has taken me time to get here and I still have my days where I get kind of down! But having a supportive partner and having this forum to come to have made a world of difference. Oh, and Ella Dawson is AMAZING! I loved her TED talk and many of her articles she has written. In the first month or two I watched her TED talk many times to help myself feel more normal.

Hey, haven't logged onto this in a while which is a good sign since it means I haven't been thinking about it. Just thought I should give an update, the meds cleared that spot up just in time for my holiday and I've had no sign of anything since :) Had a wonderful time and didn't feel worried about wearing swimsuits/going swimming/getting intimate.. So I'm verrryyy happy about that.. I think I'm quite lucky that I seem to be able to put it to the back of my mind while I'm not having symptoms. So I think my plan for now is to see how long I go without anything cropping up again and if/when it does go back to the doctor and ask about getting a script to have on hand like you said. It would make me feel a lot more prepared.. Thanks again for getting back to me, it means a lot! :)

That's awesome @Ashh, I'm so happy to hear that! :)