Confused and worried

[Annie]

Hi,

I've been tested for STDs and been told by the doctor that what I have does not sound like herpes. However, I just don't believe him because (excluding the sores) I have so many of the symptoms.

It started with a very very slight tingle on one of my labia back in January. It was hardly noticeable. It was not long after unprotected sex but I didn't think anything because it was so mild. I did get a spot in the area after about three months but it was more of a painful boil (yuk) than a watery blister. It didn't burst but took ages to go away. I would get the odd slight tingling now and again but it would go away. I didn't have any itching or any other symptoms.

I started a new relationship back in June but wasn't sexually active until towards mid July. I've not been sexually active much since as it's been the last thing on my mind.

I then started to get this increased tingling all over the outside of my labia in about the end of June. It felt a bit strange but would go after a couple of days. Then at the start of August, I felt unwell one night. This coincided with my period. The tingling came back but it was more intense and this time I felt unwell. I thought it was my period but it carried on after my period ended. My vulva at times became dry and a bit fragile and when it seemed to be getting better I would get this white stuff like light chalky mould (yuk again) at the end of the day (that's since gone). I thought I had a urinary tract infection but tested negative. I was having funny aches inside my lower abdomen. I am still getting those.

Just after this first started in August I went to the STD clinic and was tested for everything except HSV. They refused to test my blood because they said that it's not accurate and leads to people worrying unecessarily because so many are carriers. I had shaved a little to see the skin better and had a small spot which again was not like a blister. The doctor looked and said it looked nothing like a herpes blister but looked just like a normal spot. He said if I did have blisters to come back and they would test then. The spot never burst. It just got much smaller and disappeared although there seems to be a slight scar. I'm still not sure whether that was caused by the shaving.

I've since had a second period and the feeling of fatigue and aches and pains come and go. I would get aches in all sorts of places when I felt my worst. Joint pain in my knees, transient aches in my heart area, muscle pain, twinges in my nerves. I had fatigue and would just feel like going to bed only to wake in the middle of the night. I still don't feel too good. I have stopped drinking alcohol but don't feel like doing a lot of exercise. I've changed my diet. I'm still getting the same tingling although it's not as intense. I look at the area but I cannot see any lesions. I did get a slight fissure on my vulva when it was very dry but I've had the odd fissure for years as I seem to be quite delicate down there... (or have I had herpes for years without any other symptoms?)

Does this sound like herpes despite not having the blisters? I'm thinking of going back to the doctor this week because of my abdominal aches, but doctors don't seem to recognise herpes without blisters and the doctor I saw said the pattern of my symptoms did not indicate herpes. (he did not expect me to have a bad attack after milder symptoms for so long). I didn't expect it to last this long. It's been over six weeks since I started feeling ill. I also didn't expect such a strong attack when the first one is supposed to be the worst. Is there always a flu type illness with every attack? How do I get tested if I get told no blood test by the doctor?

Please help. I'm trying to get better but at the moment it feels like it will never go away....

[xerxes]

Proper diagnosis

Ok, like I said in a previous post I'm not a doctor. I don't understand WHY a blood test (serology) was not proposed (has it?) instead of culture of the virus to perform the diagnosis of HSV. Since I don't present any symptom I think a culture was not possible in my case so I had to do a blood test ... which seems to be more reliable than the culture (cannot confirm). I also think your doctor should try to help you or guide you better than he did. Make sure you get the right information, asks questions and maybe go to another clinic to receive better medical help. You should not leave your doctor's office in a state of confusion even though you don't want to know you may have HSV2.

[Annie]

I don't think they do bloods tests in the UK. Or maybe they just don't have the sensitive tests they have in the US. I assume it might tell me I'm a carrier but won't say HSV1 or 2.

[xerxes]

More info

Annie, here is more information about the blood test. I don't know WHY it would not be available in the UK. You should really get more information about it and talk to you doctor. Have you medical condition properly evaluated.

At times a special test termed a differential serology or blood test may be offered in an attempt to confirm the presence and type of herpes infection present. Older blood tests available are unable to distinguish between HSV-1 and HSV-2 infections ? these tests have been available for years and are only useful when negative. We now have at our disposition newer blood tests that are able to identify and differentiate between the two types of herpes. After an initial infection or primary infection it may take several weeks for the antibodies produced by your body in reaction to herpes to appear. The timing of such tests are important- speak with your doctor. Test results may be erroneous at times; false-negative and false-positive tests do occur, albeit infrequently.

[Annie]

Thanks Xerxes. Maybe they are trying to save money. I was not impressed with the Doctor's attitude. He seemed to think I was a hypochondriac because I was upset and because my skin looked normal even though it did not feel normal. It's really frustrating to deal with this attitude from doctors.

I said to him several times that I am worried about infecting my new partner and that this is why I came in. He just said come back when you have lesions we can test.....

I feel a bit better today (finally). However, I felt better before but then the symptoms came back after only a few days. Fingers crossed.

[xerxes]

Well Annie, I guess one way to cope with the situation is to be better informed. It's really frustrating when you go to a professionnal to seek help and it turns out you get very little. I must say at 32 I was pretty ignorant about HSV myself but I'm no doctor after all. I was in such bad shape when I learned that I might have HSV I could not have coped with a false diagnosis: I went to a specialized clinic. Like you, I had to know about my medical condition and I wanted the right answer. When you see your doctor next time, you should talk about the serology ... he should know about it.

[Justice]

I'm new here, so please forgive me if I open mouth and insert foot at any time during the next few lines of what I'm about to say.....

You are the patient. You are the consumer. If you are unhappy with the service that your doctor is providing you with, I suggest you get a new doctor who is willing to follow your requests. Just because something doesn't "look like" it's a certain condition, doesn't mean that it isn't. People are diagnosed with conditions all the time while not showing primary symptoms or the exact symptoms. The expression to your doctor of your 'thought' that it MIGHT be herpes should have been enough. If I was to say to my doctor "I think it's herpes Doc" he'd run the test because he wouldn't know if *I* knew something he didn't. Like maybe I wasn't saying that I knew I'd been exposed or something. The doctor works for you....

[Annie]

We have a national health service (NHS) in the UK which is paid for by the taxpayer. Unfortunately this means that decisions about which tests to use are made centrally. I assume the tests which distinguish between HSV1 and HSV2 must be more expensive than the ones the NHS is using.

The other problem is that most STD clinics are either walk in where you have to wait about four hours to be seen or appointment based, where you have to wait about two hours. I had to phone over and over again to get through to make an appointment. There are private clinics but most people use the nhs because that's why we pay taxes (most doctors who work in the private sector also work for the NHS). I was thinking of going for private tests because it's so much hassle going back to a clinic. Most people don't want to go to their doctor about STDs because they want results to be confidential.

I have a feeling that the other reason they don't want to test is that most carriers don't have severe herpes symptoms, there is no cure and the NHS wont have to spend money on medications. I doubt you can get the antivirals for free unless you are really sick. Meds like acyclovir are available over the counter so patients are expected to pay for them.

If I carry on having symptoms I will go to a private clinic because I just can't face the ordeal of going to an NHS clinic.

[Annie]

Ok, further to the above I've been to a private clinic to have my blood tested and am waiting for the results. I thought you might be interested in what the doctor there had to say.

He basically tried to talk me out of having the test because so many people are carrying the herpes virus and are unaware because they never have any symtoms.

He also said that if I do have herpes I may have been exposed during my first sexual encounter. I may have been exposed as a child, there is no way of knowing. Everyone I have or had a relationship with may be a carrier.

Nobody has any way of checking every carrier by doing a blood test because the blood test does not always show up a positive result because that only happens if someone has developed a sufficient level of antibodies. It is therefore a waste of time bothering to have your blood tested

The fact that the blood test may come up negative does not mean I have not been exposed or cannot pass on herpes.

Having a positive blood test does not mean that you will be contagious because even if you find out you are carrying herpes it may not be what is causing symptoms (in my case I have no sores so this was specific to me). The only way of knowing if herpes is causing your symptoms is to firstly try a course of acyclovir and see if that stops the symptoms.

There is no way of checking if you are contagious so what will you do stop having sex? If so what is the point if so many people carry it anyway without knowing.

He didn't say any of this to be contrary, merely to inform me of the limitations of testing blood. He said many people with no symptoms at all come to him because they are worried, and that a negative blood test should not give them cause to feel secure because the most accurate way to test is to take a culture from a lesion as this enables them to grow the virus.

I said I wanted the test anyway because I expect to be positive for HSV1 as most people are exposed to this as children. I just want to know about HSV2.