UK Testing for Herpes and attitudes towards knowing HSV type and general support please

[sw85]

Hi all,

 

I wanted a bit of a sounding board about my situation. I discovered blisters on my penis 6 months ago when In Peru, I got visually diagnosed by a doctor and prescribed herpes medication which cleared it up. I've had 2 outbreaks very close together at the start but nothing since. I am now back in my home country the UK and just called my local GUM clinic to check about what tests they offer Herpes.

 

I am keen to get blood tests as a tiny part of me has a tiny hope that I haven't got it even though there are many signs which indicate it is (im still working on acceptance) and also to know whether its HSV 1 or HSV 2.

 

After explaining the situation to receptionist, and I wanted to know what type, she asked me why do I want to know? I was gob smacked by this questions, or more the tone she asked it, I explained knowing had different implications (from the research I have done, differences in able to receive oral sex and possible others I haven't researched yet). I then spoke to resident nurse who Ill meet tomorrow and had the same attitude. Unless I have an outbreak they can swab they cant test for it. I asked if any other lab could and he said one place does it but its not conclusive testing, and basically don't waste my money. But their attitude was almost kind of it doesn't really matter which it is, like it doesn't matter at all (I wish I thought like this) when I mentioned I want to know for when I disclose to future partners the type, to which he commented its your personal choice whether you tell someone or not we cant advice you either way.

 

But one example he gave was if your in a relationship and want to have un protected sex, you should have that discussion with your partner before unprotected sex. WTF? This makes my mind boggle.... this is coming from a sexual health professional? Surely you would disclose before things got sexual with protection, and if you didn't, the outcome of this scenario is guaranteed right? that person walking away?

 

I'm going to the clinic tomorrow to get a full test for STIs which I'm nervous about, I had bloods done for HIV and others 3 months ago and negative, but have read HIV has a 6 month window, and I have to some times stop my mind from racing away!! Will also meet with the nurse to discuss things more.

 

I've read a few posts where the different tests give false results, is it worth opening this can of worms with the different test types?

 

Am I too fixated about knowing the type? Does it matter?

 

Thoughts please.

 

Stu

[New_Moon]

Hey @sw85, I'm from the UK too :) back in the day they used to do a blood test but they stopped - I asked why and they said cos herpes is so common and since it's not cureable they can only treat it when it appears. Plus they mentioned the stigma but basically since they are keeping people in the dark and are not educating people Its perpetuating it and make us that know feel like we are alone - until we do research that is!

 

I think you should find out but wait till you have an outbreak and get it swabbed since they have said there is not a reliable blood test in the uk!

[Sil88]

They were quite relaxed about it with me too (UK also).. the nurse said if I was just having casual sex that I didn't need to disclose. Well each to their own, but I couldn't do that. She did sort've mutter 'it's type 2' as an afternote too, as if that was worse than the news of generic herpes a few moments earlier. I agree with @New_Moon.. With the best intentions, I hope you have another OB soon so you can rush over for a swab and get an answer. Btw I think if you tested negative for HIV after 3 months, you can be 99.7% certain.. I get those thoughts too.

[New_Moon]

Hey @sil88, Im sure the NHS leaflet it actually says use protection until you can tell them!! Outrageous advice!! More education needed for sure, even for the nurses and doctors!!

[New_Moon]

Great post @MissingMe, you know your stuff!

[WCSDancer2010]

They were quite relaxed about it with me too (UK also).. the nurse said if I was just having casual sex that I didn't need to disclose.

 

OMGeeeee! If you ever hear that I've been incarcerated it will be for committing grievous bodily harm on an idiot health professional that says something like this ... SMH ...

 

@sw85

 

Quick perspective on your AIDS fears:

 

Odds of getting AIDS from heterosexual sex without using a condom: 1 in 5,000,000

Odds of dying from contact with hot tap water: 1 in 5,005,564

 

Not sure where the person at the website I saw this at got their stats, but I know there are a lot of great places to look up stats for EVERYTHING ... I thought this was a funny but useful comparison just to put things into a more balanced light :)

 

So - I lived in the UK for 8 years back in the 90's ... so while things may have changed, one thing I learned real fast was to stand up for MY health with the doctors because they are going on what the NHS tells them they can and can't do (ie, what they are willing to spend money on) ... I finally learned that if I didn't agree with the Dr's "protocol" I just plain had to pitch a fit to get them to "look into other options" ... so you may just have to go in with all the facts and refuse to leave without the blood test.... because you are right... it DOES help to know which one you have and you SHOULD disclose every time including casual sex (makes you wonder what the collective opinion of those who have casual sex is of those Dr's ... do they think it's ok to not disclose because, well, people who do that sorta deserve to get it or what????). And the bottom line: It's YOUR body and YOUR love life and if you really want to get those tests then you have every right to demand them .... And the "inconclusive" argument is invalid because even though there can be false positives after the 4 month window they should be reasonably accurate and in your case (because you had symptoms) you could take any "positive" number as conclusive even if it's on the low end of the scale.

 

At least you may have the HVA as a back-up... but I'd try first to educate and inform the Dr's and get the test that way ... just for the good of anyone else who goes in in the future :)

 

And NOTE to my USA counterparts who think that a Single Payer System will be the answer to all your health care woes.... that system still has a BUDGET and many things that YOU think you should have won't be included in that budget .... including things like Herpes tests and knee replacements without a 5 yr wait .... :(

[sw85]

I neglected to update this post, sorry for that. I had clear results from everything else, which is a huge relief.

 

Thanks for info about hva. This hasn't been on my mind for a while unfortunately larger things have taken over. I haven't had an outbreak for 7 months which is good, as ive had tough times recently and stress is meant to be a big trigger, I'm not sure what will trigger an outbreak as stress has been pretty high recently.

 

Would be great for those UK people to have a chat too, about your experiences

[Lozpot]

Hi there,

 

I cant help you too much with advice on getting tested but I will share my own experience. I got HSV1 genitally from my long term partner via oral sex. I knew he got cold sores but had no idea at that time that one could contract genital herpes from a partner with cold sores. At the time he didnt even have one. It cropped up a few days later. I TOTALLY share your view that education in this area is poor in the UK. I consider myself to be pretty aware of things but was unaware of this. Subsequently I have found out everything I can about it.

 

Anyway, I was able to have a swab test done at the time which diagnosed HSV1. I got antivirals and it cleared up. However, in the last 2 months I have had what I think are repeated outbreaks. Minor, but one after the other. They consist of itching for a few days then a small outbreak of a tiny spot or two which look just like the lesions from my original OB. Because they have occured in a cyclical pattern over the last 2 months (ususally after sex) I went to my GUM clinic for advice on how to manage it. I have had a full health screening twice since my original diagnosis and had a third sexual health MOT this week. I am clear for all other stds and problems. Depsite me saying clearly that I had HSV1 and was getting what I thought was repeated outbreaks the doctor seemed to dismiss this entirely. She said it might be thrush (even though I tested negative and canesten doesnt work on this problem) I specifically asked for advice on dealing with Hsv1 ourbreaks and she seemed to think none of it was relevant. Yet this is the ONLY CONDITION I HAVE so what else can it be?!!!

 

So I have resorted to sorting it out myself and paying for antivirals online and managing the condition with advice from sites such as this.

 

I have to agree with you fully that the approach to Hsv seems woeful in the UK. Yes, that may be because it is common but at the same time there is stigma and a lot of people having to deal with the irritation of having the condition.

 

So frustrating

 

Loz

[2Legit2Quit]

Ugh... I am terrified for what our healthcare will look like in the future.

[WCSDancer2010]

@2Legit2Quit

 

That's why I'm against a Single Payer system over here ....

 

but even so, in many areas, it's not a lot better over here.....we have a lot of ignorance and misinformation in the medical community here too :(

 

[2Legit2Quit]

@WCSDancer2010 I agree and when I get to explain, I can't give good exmaokes w put outing how I know from experience from another forum I'm on.

 

I agree it is bad, but I am on a UK foein as well and I've not seen any medical advise on herpes on the US from dkcs, that us as horrendous and common, coming from the UK.. With his hard it is to get tested and I had such severe neuropathy there, I'd probably wanted to kill myself had I had to live in pain w no nerve pain meds for the months I had it. I couldn't even sit up, tailbone was in fjre among other things, even after herpes cleared out... Just scared me what's going to come if our healthy systems now.

[Sil88]

No complaints about the NHS here. Service since I was refered to a specialist has been excellent. Free CBT, CT scan, echo cardiogram, blood tests galore.. even though I tell them it's probably just a special case of hsv. The only thing is you may have to drive somewhere with shorter waiting lists. One of the worst things I've ever heard of is desperately sick people trying to budget for their own overpriced cancer medication in the US, or begging not to let able-professionals save their life. Almost makes me feel good about paying so much in tax! Although as the general population becomes older (combined with UK binge drinking weekends) it is putting a lot of strain on. If we didn't have the system in place, we might look after ourselves better. A $6000 ambulance ride would probably deter anyone from having a drunk scrap after a night out again. Aside from that, education is a separate issue.. definitely we need to raise awareness and probably we should afford to investigate unusual complications. By the way, how does family planning work in the US? Can anyone walk in and get free STI testing and condoms like over here?

[WCSDancer2010]

A lot depends on your area but most at least have free clinics to test for HIV, syphilis and ghonnorehea... and Planned Parenthood will usually give sliding scale and let you pay off the balance over time... I had an STD panel done, should have been about $300 ..they charged me $125 when I told them I had to do payments and I took 5 months to pay it off, which I thought was reasonable.

 

I agree that insurance as a whole makes people rely on others for their health ... wneh HMO's popped up here, everyone had dirt cheap co-pays ... they got reliant on being able to go in for a papercut, now many don't know how to be responsible for living a healthy lifestyle because they are already overweight, have heart disease, or whatever and NEED the health care system to live... :(