Help , life being ruined ..

[worriedgal89]

So I know that I have genital herpes as I have had about 2 or 3 classic outbreaks in the past 3 years . However , I seem to have constant symptoms every day of my life; for the past 5 years at least . It's ruining my life and no doctors can help , I have been tested for yeast ,BV, and every other std. I have no irritants ever come in contact with my vagina . Is it even possible for herpes to be active almost constantly for 5 years ? The symptoms are nerve pinch feelings ; itching ; irritation , and a burning feeling following being touched . I cut out chocolate , coffee and nuts and still no help.  The most accurate thing I have found that describes my symptoms is vulvodynia . Please any help or advice would be greatly appreciated as it's making me very depressed

[auntiejessi]

How did you end up getting tested for it? I read your old post and it seemed like you were having a hard time getting diagnosed for sure.

If you have vulvodynia, then see if you can find a vulvodynia specialist in your area. Here is a list (I know nothing about this list, so I can't vouch for any of them, but it's a starting point) - https://www.medicinenet.com/vaginal_pain_vulvodynia/city.htm

Herpes can trigger vulvodynia, but not usually.

There are some things you can do while you wait to see a doctor. Start by changing your toilet paper, then your body wash, then your laundry detergent, then get all 100% cotton underwear. Do this one step at a time to see if you are having an allergic reaction to something. (It doesn't matter which order you do this in, just do it one step at a time. If you do it all at once, you have no idea which thing is causing your symptoms, unless you stop everything all at once, then wait a few weeks, and introduce things back one at a time, which is also valid.)

Even if you think something isn't an irritant, it may be. One brand of perfectly white gentle toilet paper may have something in it that is causing you to react, whereas another won't.

If you use anything with scents, start there. If you douche, stop that immediately.

Are you taking valtrex or acyclovir? Some people find the nerve-type pain eases when they switch to the other or stop taking the meds.

I hope this helps. I know how frustrating this is.

[worriedgal89]

Thank you so much , I have tried not even using toilet paper and just washing cloths every time and it didn't seem to help . I also tried the cotton undies and no soap or anything . Detergents as well.  I have acyclovir and it seems to ease up symptoms briefly for a while . I  was never tested for herpes because in Canada it's next to impossible . But I had nerve pain , sensitive skin and blisters when the outbreak happened so I just assumed that's what it was , as I looked at other things that can cause blistering down there and herpes is the only thing that seemed to fit . It's like I just always have the prodrome feeling that I had with those couple of outbreaks I have had. I guess I am just worried about why I am having constant symptoms . I have been tested for HIV several times and negative , so I don't understand it . My doc seems to not want to put me on suppression therapy .. even though I have told him this is ruining my life.  I'm sooooo done with doctors

[auntiejessi]

Ugh Canada sucks with herpes testing.

I found this - https://www.letsgetchecked.com/ca/en/home-herpes-test/ I can't vouch for it's accuracy or anything, and it's expensive, but if you can afford it, maybe it's worth a try? It sounds like herpes, but if it isn't, you need to find out what it is, and if you get a positive result, then maybe it would help with treatment.

Can you tell your doctor that you have a new, herpes negative partner and want suppression to reduce transmission?

I don't fully understand Canadian healthcare, but can you ask to see another gynecologist? Is your gyno the one who won't put you on suppression?

I'm so sorry. It doesn't have to be this hard. :(