Going crazy! Is this herpes or not?!

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.

[gracefromHHP]

Even though even the best blood tests we have now for herpes still miss 1 out of every 10 hsv1 infections ( if your bf had a cold sore and performed oral sex on you - it would've been hsv1 ). That said - even if you had hsv1 genitally - it doesn't sound like it's the cause of all your symptoms.  Hsv1 genitally usually doesn't reoccur very often and it doesn't cause constant symptoms for 5 years.

At this point you have double the work to do - find out what is going on along with breaking the pain cycle from having symptoms for so long :(  If you can find a vulvodynia specialist near you - make an appointment with them for a further work up.  They specialize in pain in our genital areas and are good at looking outside the box as they say.  Also when they have been examining you - are they just doing a visual exam and guessing yeast or are they doing a wet mount and examing your vaginal secretions under the microscope to look for both yeast and bacterial infections?  

it totally sucks when your nether regions are making themselves known to you all the time :(  Follow up on this to hopefully get answers and treatment.  It's not due to herpes so it's time to move past that.  

[lucie332]

Hi Grace and thanks for your help. The thing that make me think it could be herpes is the leg and buttock pain (on one side) - I have never heard of any other STD that causes this. And the pain is very "deep" - it's definately not just surface pain that could be due to yeast or something like that.

[gracefromHHP]

Believe it or not - more than just herpes can cause leg and buttock pain!!!  You can have nerve issues like a pinched nerve and/or sciatica.  Also other infections can cause pain like that too  - not just herpes.  Don't let your mind convince you that this just HAS to be herpes. Consider that you have more than one thing going on and follow up on them all separately. If you have this pain all the time - see a neurologist for that part.

[lucie332]

But all the symptoms started at exactly the same time with the 1st outbreak, so I have trouble believing they're unrelated. Though I do agree that a lot of this is in my head - i just have to see a valtrex ad for the pain to get much worse!
Then again the leg pain is also at it's most intense when the vulval pain is - they definately work together.
Arrgh... thanks for the advice anyway, I didn't even know there were vulvodynia specialists - I'll check that out.

[gracefromHHP]

If you fell off the sidewalk and landed on your butt and then the next day woke up with a headcold - would you assume that the fall caused the cold?

Sometimes you just have to change your way of thinking. It could even be that whatever is causing the pain in your leg and butt - is actually contributing to your genital pain too.  It's been 5 years - it's time for more follow up and answers - you've been hurting enough :(

grace

[lucie332]

I have checked out some stuff on the net about vulvodynia, and that could be what I am suffering from - except that vulvodynia can't be transmitted, and I definately passed something on to both of my exes. I'm seeing a(nother) new doctor on monday though, and I'll see what she says.
Thanks a lot for all of your advice. You do a great job here.

[waringblender]

You have some psychosomatic issues. I suggest antidepressants.