Herpes in the UK

[Amillionthings]

Hi All,

 

So I went to a clinic today...in the UK....and its a shock to find out they dont test for herpes with a blood test and only do a swab if theres an outbreak. I requested one and couldnt have a blood test....i explained all the knowledge and info I have and from this wonderful forum and that testing blood can show anti-bodies etc...but i was told the the results from the swab determine if its hsv1 or HSV2.

 

Its just shocking that it cant be tested for...it will just continue to spread...because the 80% of people who have it, dont know. So theres no treatment to help prevent it. I was told that a blood test doesnt work anyway??

 

Also ive read conflicting figures for hsv genital...in the UK....from 1 in 4 or 5 people...to 1 in 10....anybody know the real stats?? Just curious....in the US the figures are so high i wouldnt feel such a minority ;) I might move to the US :)

 

 

[New_Moon]

Hey there Amillionthings :)

 

I'm from the UK too and yes I agree it is a nightmare they don't do a blood test anymore, they used to about ten years ago but they stopped as the majority of the population has at least one form of herpes. The doctor who I spoke to about it also said other reasons for not testing is that because it can't be cured and has a stigma! The health service are actually perpetuating the stigma by not educating people and letting in spread by not diagnosing people!

 

Think the 1 in. 4 t/ 1 in 5 of sexually active people is about right, well those are the stats I've come across commonly .. Remember less men than women have it so maybe the 1 in 10 refers to men or it is not, not sure!

 

I'm keeping this brief as I'm on my phone , the writing is so small and I'm sure I've done many autocorrect fails in this brief posting ha! Will check back in on my laptop when I have more time!

 

Hope you are hanging in there, this place is great and the support team here are really amazing :)

[Amillionthings]

Hey the fellow uk'er :)

 

Really...10 years! Thats crazy!! I believe the facts its incurable, has no health implications and has a massive stigma is basically the reason behind it! If only influential people within the medical industry, who have the power etc ..might look at it from a more human perspective and look at the emotional upset and mentalbeffects etc it causes...

 

wish testing was just routine for herpes...but i suppose ignorance really is bliss when it comes to herpes hey....yep i think the 1 in 5 fig. Is probably correct. Only 80% of people dont know though...the nurse told me today dont worry about transmission as most people have it!! :/

 

hanging in there, not a good day :/ but just keeping on...hope youre ok?

 

Oh definitely an amazing forum! Wish i would have found it years ago!

 

Youre autocorrects are grand ;)

 

X

[Amillionthings]

I meant 'fellow uk-er' not 'the...' ha...read it back and sounds a bit odd...sorry! Ha! :/ x

[ra1956]

Hi,

 

Think maybe the entire aim is for entire UK to HSV2 become positive over time? If it becomes as common as cold sores (80-90%) then no more stigma. Can't see any other reason why they refuse to test. Maybe the cost? If that is the case, then with Obamacare - we will see same in the USA. :-(

 

Thanks and take care - Ra

[WCSDancer2010]

Well, part of the problem in the UK is that with a National Health Service, they dictate to you what is available and your options are far fewer than places where people are self-insured. (Take note of this my fellow Americans who think a National Healthcare System will take care of all your problems! I know, I lived there for 8 years :( )

 

I wonder if you can find a private clinic that would do it. I bet it IS available... the NHS just doesn't want to foot the bill for so many people

 

And we have the same "excuse" here with the CDC - "it can't be cured and the mental anguish that comes with it isn't worth it". WTF?????

 

I keep saying...the ONLY way we will change this will be to start a public movement and shame the CDC through media campaigns into changing their policies. If they saw the agony of those who are diagnosed on here, they might just start to see that their policy is causing an epidemic that is causing far more mental anguish for the 97% who are correctly diagnosed than they will ever get from the 3% who are false positives ...

[Amillionthings]

Hey Ra,

 

To be honest...with the statistics...the no blood testing and the stigma...it looks like its going this way. God i wish we could ALL get tested and be like...hey you got hsv...me too....no shame....this no testing is adding to ignoring it....blissful for those who dont know....not so great for those of us who do! Which i didnt know!!

 

Dont know much about obamacare, sorry...but i get the jist.

 

As long as its on genitals theres stigma :(

 

take care too Ra :)

[Amillionthings]

Ok...so its the NHS then....how unfair...they could maybe offer it at a charge so atleast its easy to access.I will have to look into a blood test outside of the nhs.

 

Perhaps if they look at the figures of actual outbreaks...for example 100,000 a year and consider that a huge percentage of these people will suffer some kind of emotional effect...anxiety..shame...depression etc....that should be enough to kick start a 'no shame ' campaign. Someone needs to research these forums....it would suprise many im sure. I suppose that medically its so unimportant because it is essentially not a risk to a persons health at all. Its a cold sore.....a good start would be a campaign abou cold sores and thier transmission to genitals and that (i think ) 50% of new hsv genital outbreaks are because of cold sores....sooo many people have cold sores and theres little to know stigma or shame associated with them.....so it would get peoples attention...and may be an avenue to lower stigma, increase knowledge and share true facts....let it be known its normal to have it....we just dont test for it. .....just a thought of mine. Whatevers being going on so far isnt decreasing the stigma...so lets use the 'hood herpes' as an avenue to help kill the stigma. One big ad campaign on tv in the us and uk..

[ra1956]

Hi,

 

I thought I had seen something bout private std testing in the UK in my many hours of hsv2 reading. Take a look at https://www.better2know.co.uk

 

Does not give a cost - would hope it is no more than in the states - bout $150 or bout 75 pounds for hsv1/2 testing.

 

Good luck and take care - RA

 

 

[WCSDancer2010]

@Amillionthings

 

You got it right about the campaign. Adrial and I are working on changing things here and an advertising campaign is part of that... not sure if we can have any influence over there... I'd say we need people like you, who are there, to help us to find ways to start a grass roots campaign over there. ;)

[Amillionthings]

@ra1956...thanks Ra

 

Dancer...im glad you and Adrial are working so hard to help....you never know it may have influence here...this it true...you need people who understand. Maybe thats my calling...to help others? X

[WCSDancer2010]

YES!!! We need more and more people to say "Screw it, I'm not ashamed... and I'm damned if I'm going to let this virus get to me...nobody puts Amillionthings in the corner!" LOL

 

That's where I got to last November when I came out completely (have you seen my post on my coming out?) and I have NO regrets.

[New_Moon]

@amillionthings didn't notice the "the" but don't worry about sounding odd, I took it in the way you intended :)

 

There's a UK website that has a helpline ,they are really great like the people here... One of the women involved with the site is on the nhs website she is talking about h on a video! Will post the links on here next week! @WCSDancer they might be a good source for you and Adrial to tap into if you are taking your campaign world wide!

 

Phone and autocorrect and tiny text driving me nuts so will leave it at that for now, will post again ASAP :)

[Amillionthings]

Thanks new moon. Yeah i saw the video...she got it later in life...if thats the video im thinking of....yeah a really good source for dancer and adrial.

 

Hey dont worry about auto correct :) x

[WCSDancer2010]

I'd love to have the links @New_Moon :)

[New_Moon]

@WCSDancer2010 here you go :)

 

NHS website with Vid:

http://www.nhs.uk/conditions/genital-herpes/pages/introduction.aspx

 

Website with helpline:

http://www.herpes.org.uk/

[WCSDancer2010]

Thx :)

[Paysage1]

On 3/26/2014 at 2:24 PM, Amillionthings said:

Hi All,

 

So I went to a clinic today...in the UK....and its a shock to find out they dont test for herpes with a blood test and only do a swab if theres an outbreak. I requested one and couldnt have a blood test....i explained all the knowledge and info I have and from this wonderful forum and that testing blood can show anti-bodies etc...but i was told the the results from the swab determine if its hsv1 or HSV2.

 

Its just shocking that it cant be tested for...it will just continue to spread...because the 80% of people who have it, dont know. So theres no treatment to help prevent it. I was told that a blood test doesnt work anyway??

 

Also ive read conflicting figures for hsv genital...in the UK....from 1 in 4 or 5 people...to 1 in 10....anybody know the real stats?? Just curious....in the US the figures are so high i wouldnt feel such a minority 😉 I might move to the US 🙂

 

 

You can Google regional stds throughout the uk.

[Spinster1978]

Hey fellow UK people. I got diagnosed with hsv2 a year ago. I'm now on suppression but still have regular outbreaks, really horrible ones. I dont know what to do? Another GUM appointment sit and wait for hours? The system seems bizarre. I feel so low about it all surely this isnt right to have constant sores? 

Really hope someone can advise me? 

[Anonymous88]

I was diagnosed with hsv2 over a year ago and I too put a post on here sharing my experience of how it is to have genital herpes in the UK with how they don't test for it,its shocking.

The clinic then themselves help the stigma become worse because they are not educating people enough. I never knew about herpes until I caught it and I too was one of many people that would do the right thing to go in and get checked and then just presume that you are having the full std check and when it comes back negative then you are completely clear of everything but its not the case.

They don't support you and just leave you to deal with it on your own. The lady who swabbed my outbreak actually said with a massive smile on her face that its herpes like I should of wrapped my arms around her happily like I had won the lottery...such a bizarre reaction to give someone. She didn't seem sympathetic at all.

I am on suppressive therapy as personally for me after the awful experience of how I was given it is way too much on my mental health or keep being reminded even more when I have an outbreak I want to try and live a worried free life as much as possible but I feel my choice to stay on suppressive therapy hasn't been very supportive as the sexual health clinic professionals don't want you to stay on it so I have had such a difficult stressful time fighting to stay on the acyclivor.

I am left feeling alone as no body else I know has outbreaks and I am very open with close people about it. Genital herpes is a big deal, no matter how positive you are about it. It has caused a lot to my life and with no cure.

[Amando]

I'm from the UK too 😉

To be honest most of us on here were not that educated on HSV until will contracted it,
I know absolutely nothing about chlamydia but I bet I would if I ever caught it.
I think its about time schools educated youngsters on all STD's in a lot more detail.

Personally I do see sense in not blood testing for HSV,
because it is not conclusive & you could still have it if your test came back negative or vice versa, so what is the point?

@WCSDancer2010 Don't diss the NHS, they are incredible 😀

 

[Anonymous88]

@Amando I know what your saying but I would much rather have Chlamydia than herpes..take anti biotics and then it's dons where as herpes it haunts you for life,it never goes away and you have to disclose to every person that you become intimate with.

I agree they should educate everyone,as for me at school they were always just concerned about pregnancy.

I even suggested at the clinic to have a poster up to make people aware that the full std test do not cover herpes but they refused so they help make the stigma worse by not opening up about the subject.