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lucie332

Five years on, I need to know - please help!

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lucie332

About five years ago, about two weeks after my then boyfriend performed oral sex on me, I came out with a very painful lump on one of my vaginal lips. I immediately thought of herpes as he was getting over a cold sore at the time. Since then, I have been in constant pain, with itching and burning in the same place as the original bump, aching down one leg, and generalised itching all over my vagina, although there have never been any other visible clinical symptoms. These seem to be fairly typical symptoms of herpes. However, I have had two type-specific blood tests that have both come back negative, and some doctors have told me that herpes does not cause continous pain. I have also tested negative for yeast.

I have since then accidentally infected two partners, who both suffered from little red bumps all over the head of the penis and peeling that went away after a few days, with no itching or pain. This doesn't seem like herpes either.

This has been going on for five years now, and I am sick of being in constant pain and feeling dirty. I am in a serious relationship and we would like to stop using condoms but I don't want to infect him as well... I have been prescribed all sorts of treatments (including treatments for herpes and yeast) that have cost me a fortune and had no effect.

I would like to know how accurate are the blood tests for herpes and otherwise what do my symptoms suggest? It can't be another STD as both my partner and I were virgins at the time.

Thank you for any help that you can give me.

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lucie332

Oh, and I forgot to specify that the tests were three years after the first outbreak, so the negatives can't have been due to a time problem.

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spytfyre

u sound like me. I have had the itching,burning,tingling issues and pain and it lasted for almost 3 months straight from Mar 06 to June 06.my first tests were neg for II and pos for I and back then I didn't know you could get I on your genitals.Anyway, my doc put me on valtrex when I went back in June was 90% positive she said I had it.She ordered another blood test in case and it came back negative for both,this was a little over 12 wks later. A year and almost a half I'm fine and then around the weekend before or beginning of thanksgiving week I start having the same problems again.I'm going to get tested again on Thu and just get checked for everything our health dept does everything for free including the HPV vaccines which I'm going to ask for because I had that before and it caused pre-cancer of my cervix while I was pregnant.My bf is upset because I told him I was okay. He hasn't been sick at all and we've been together 14 mths next week. I keep reading different stories on here, one lady posted a thread who was 47 and was with her ex husband for 17 yrs and then after a 2 yr relationship and just tested positive for herpes and neith ex has it I cannot begin to understand how that happened. I keep reading about false negatives and false positives. Just keep getting tested is the only thing I can say. The guys you were with you said you accidentally gave this to did they get tested? and what did you accidentally give them since you aren't sure you have herpes yet?

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lucie332

My exes both had little red bumps and peeling, but no pain - they both saw doctors but once the symptoms were gone (upon my insistance, because they refused to at first - men!). They were told it was probably yeast, but in that case, why do I test negative for yeast? Obviously, there would be no point in my 1st boyfriend getting tested as he would come up positive because of the cold sores.

If I do have herpes, then it would indeed be HSV 1, as I caught it from oral sex - but I tested negative twice. I am going crazy!

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alwall0828

Not to sure about your negative testing but I do have to say you may have HSV2 even though it was from cold sores. because you can be infected with either 1 or 2 in either place so if that someone was infected by strain 2 you would have 2 as well. 1 or 2 doesn't mean the place, just the strain of HSV

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VVK

If you keep getting tested negative for herpes, then maybe you don't have it. However, there are a few things that you didn't specify or that need clarification:

1. When you said that you had two "type-specific blood tests", do you know these to be IgG antibody tests? When were these taken and how far apart?

2. Is the lump still there? If so, you should get it checked out by a competent doctor and dermatologist.

There must be a reason why you have put yourself through such pain for five years. What did the doctor say about your tests coming back negative?

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lucie332

@ VVk: yes, both tests were for IGg antibodies. The first one was two years after the first symptoms and the second one a year after that. So no seroconversion problems there I imagine? In the second lab they told me that herpes blood tests were notoriously innacurate because the virus sometimes doesn't make antibodies, but I don't know if that's true or not - I have heard a lot of different opinions.

To answer your second question, the lump went down after two weeks but the pain remained. According to my gyno all there is now is generalised redness "which could be anything".

I have seen about ten different doctors who have all told me different things (some of which I later found out to be completely untrue). I am seriously losing faith in the medical profession as a whole!

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VVK

I can see why you are losing faith in the medical profession. That is okay! I don't have any faith in it either apart from curing simple afflictions or life-threatening conditions.

As far as I know, HSV IgG tests are ~99% accurate. If you're testing negative, I don't think you have it. You could have one more test to be sure, but it honestly doesn't sound like herpes anyway. Have you ever had a cold sore prior to the tests? If you have, then the problem may be with the lab doing the tests.

Chances are, however, that you don't have HSV.

Have you tried getting tested for other STIs? I know that you think it isn't possible for you to have something else (as you said in an earlier post), but the truth is that STIs don't have to be contracted through sex initially.

Do you have access to a different ob/gyn that could give you a second opinion? If you do, write down everything that you know in as much detail as you can - symptoms, partners' symptoms, pain that you feel, descriptions, etc.

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lucie332

I have had been tested (twice!) for just about every STD that exists, and what's more the boyfriend who had the coldsores in the first place had never so much as kissed a girl before me... and the same for me. So I really can't see how it could be another kind of STD. And no, to this day I have never had facial herpes (at the age of 16 I had no idea you could get genital herpes from coldsores, but I was terrified of catching them on my lips... so I wouldn't even kiss my ex on the cheek when he had an outbreak. Ironic, huh?!)

The thing is I'm suffering from itching, burning, a sort of weird tingling feeling that feels like a worm crawling around under my skin, all in the same spot, as well as pain in my leg and buttock. I may be working myself up but I can't think how this could be anything other than herpes, especially as I was definately exposed to the virus.

I have seen several gynos, some of who were helpful and some who told me a pack of lies ("you can't catch herpes from coldsores, they're two different things" "There's no blood-test for herpes" "you can't transmit herpes if you don't have an open sore" etc). I could forgive this coming from a general practitioner but these people are supposed to be specialists!

My current gyno is at least honest enough to admit she doesn't have the faintest idea what's going on...

This is basically why I decided to check out this forum, because at least I could talk to people who are going through the same thing... and I've learnt more here in a month than in five years in the doctor's office!

At least my boyfriend is supportive... when I told him I might have herpes he just shrugged and said "Is that all? From the fuss you were making I thought you were about to tell me you had terminal cancer"

Which is a way of looking at it I suppose..!

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VVK

I'm relieved to know that you at least have some support from your bf. It is really amazing that you can go through this for 5 years without any significant progress in diagnosis.

It is very very unlikely that you have herpes - unless the same lab did the same test and made a mistake twice. The tests are usually very accurate. Do you have access to the values that were found in the tests? It's not just "negative" or "positive".

Also, did your ex-bf (the one that you think gave you the disease) get tested for herpes? I think it would be interesting to see if he tests positive or not, because it would show if he is able to produce antibodies to the virus.

When you say that you have been tested for pretty much every STD out there, would you agree that you have been tested for Syphilis?

At this point, if nothing is coming up, I am also wondering three things:

1. Are you still infectious?

2. Did your ex-boyfriends also experience nerve pain like you do? And do they still have it?

3. Could your symptoms be caused by a separate process than what caused the initial lump?

It could be that you had a non-recurring infection that went away (or perhaps the lump was a benign cyst), that your previous partners just had some irritation (can happen after sex), and that what you have right now is a result of some other factor(s) that aren't being considered.

Maybe with some more dialogue we can get a better idea of what this might be, or give you an idea that you can share with the gyn to get a better diagnosis.

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lucie332

I'd just like to say thanks a lot for your help, VVK. I really appreciate your interest!

I actually saw my ex boyfriend over Xmas vacation (the one who had cold sores), and he told me that he still had symptoms, i.e pain, redness and sciatica, and that he'd seen a doctor who visually diagnosed a fungal infection, and gave him a cream that didn't really do any good. The thing is I know the doctor he went to, and I know him to be an incompetant moron (as does eveyone in town), so I'm not sure how much i trust the diagnosis. I asked my ex why he didn't get lab tests, and he answered that he'd "rather not know" if he had anything serious (!) and that he had a "lab phobia". I (tactfully) suggested that even if he wasn't interested in finding out what the problem was, he could at least do it for my sake; he just replied that it was "my problem". Needless to say, we're not on very good terms anymore!

Someone suggested to me on another forum that he couldn't have caught genital herpes from me as he already had cold sores, and that this would have immunised him from catching herpes elsewhere on his body. Do you think this is true?

My other ex just had redness and peeling, with a bit of itching, which went away after a week or so, and he actually got the same symptoms everytime we had unprotected sex. I agree this could just have been an irritation (especially as we had a long-distance relationship which meant no sex for a month then a lot over one weekend); it actually looked the same as what my other boyfriend had but wasn't constant and with no nerve pain.

I have no idea if I am still infectious as I avoid having unprotected sex now (which is a pain in the ass as I am in a steady relationship and would like to leave the condoms off, but I'm not prepared to take the risk).

The current symptoms are definately related to the original lump as the "core" of the pain is in exactly the same spot.

I've just checked my lab results and you're right, they didn't test for syphillis; but as I said I don't see how my ex could have had it (I am absolutely 100% sure he didn't cheat); and if it was that wouldn't there have been some pretty serious consequences five years on?!

Re. the two herpes tests I had, they were in different labs and were different kinds of tests (I think).

The first one was an E.L.I.S.A test (I was living in france at the time so I don't know if the name means anything to you) and the results read:

antibodies anti-HSV1 IgG: negative

antibodies anti-HSV2 IgG: negative

antibodies anti-HSV1 IgM: negative

antibodies anti-HSV2 IgM: negative

The second one was an "EIA immunochemiluminescence" test and read:

herpes virus I + II (IgG) = negative.

I didn't get the values for either of them.

Yes, I too am pretty amazed that this has been going on for five years and I am no closer to getting an answer. I tell myself that I am lucky at least in that when I was in France I got all my tests and treatments for free - I am simply horrified by what I have been reading here about the USA healthcare system - it's bad enough having a nasty itchy disease, moronic doctors and an unsympathetic pharmaceutical industry without having to spend all your shoe money on treating yourself!

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VVK

It's a pleasure to help :) and I'm learning at the same time.

About you giving your ex herpes: It is still possible to spread HSV genitally even if there is a protective action of oral HSV, although somewhat less likely. Once again, the problem is that you're testing negative.. from two different labs by the looks of it. Will the third time be the charm? Somehow I doubt it... the constant pain is also very very suspect. The disease isn't presenting the way it is expected for herpes.

About syphilis: It mimics a lot of the symptoms of different diseases. It affects different people differently. The way I look at STIs/STDs is that, initially, somebody had to have gotten them without sexual contact. This means that sex is not the only way to get these diseases. An interesting thing about syphilis is that in the latent stage (2 years after initial infection or more), the disease is generally not infectious. However, the bacteria are still inside and destroying the body for up to 50 years. Again, symptoms vary.. Nerve pain is listed as a symptom. I would suggest getting checked for it, because the solution is often simple - penicillin.

I guess my point is that it isn't fair to rule out diseases classified as "sexually transmitted" just because you trust a person and even if the person did indeed not have any other sexual relationships. The infection may still be there. It isn't fair to stereotype diseases and unfortunately this is done in medicine.

I also feel for you about being in the US, along with many members of these forums. It is somewhat better in Canada, but honestly I am planning to run away to Denmark or Sweden in the future.

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