vulvodynia and herpes connection

hi all!

just an idea, what if vulvodynia is simply a kind of herpes without outbreaks? I know that many have tested negative for herpes. But there are several variations/types of this virus. According to my doctor around 80-100 stamms. So what if it is just a kind that can not be properly diagnosed? I.e. herpres zoster gives people long term nerve pains, even when the outbreak is over. The VV pain is a typical nerve related pain and herpes lives in the nerve ganglias. I know that many sufferers (including me) have flares around ovulation. I recently researched the connection between herpes and estrogen. There are some links between starting birth control, estrogen and herpes outbreaks.
In the beginning of my journey with VV i was tested for herpes, the results came back negativ. Two month ago I undergo some injections for my immune system. Unfortunately, my body reacted in a bad way to them, something went wrong and I got a kind of rash (like chicken pox, but I don't know exactly what it is and my doctor either) on the skin near my vestibule. This got better now, but not completely gone. During the outbreak I had a kind of tenderness and pain in my lymph nodes and my VV flared very very bad. Immediately after the outbreak I have done blood tests for herpes 1 and 2 type and herpes zoster. Only the results for herpe 2 were slightly positiv (for the first time!). But the rash I got doesn't look like typical herpes.
Just a little backgrond: I have had suffered with a classical type of vulvodynia for three years. Tested for everything negativ. It came after an antibiotic prescription (cipro) for an UTI. Tried many things, nothing has really helped with the burning so far. I was not sexualy activ since the beginnning of VV. Since that UTI I have from time to time a slight tenderness in my lymph nodes on the right side, and with this tenderness my VV flares also! it happens very often during the ovulation.
sorry for my english, i am not a native speaker

I'm not sure that herpes would explain everyone's experience with VV on here... but, I have also been diagnosed with HSVII. So maybe for some people there is a connection?

Ive has V pain since I was 12/13 and there is absolutely no way I could have come into contact with the Herpes virus in that area at that age-I requested a test for herpes that came back negative not so long ago (even though Im not sexually active I just wanted to rule everything out) I think mine came from untreated yeast infections that damaged the nerve endings-A specialist I saw said that the nerves in that area had become so used to being in pain and being itchy that it became the default feeling for them.

I have tested negative to herpes. If this could be the case, how would I go about finding out? ):

Hi

I had shingles 16 years ago which is herpes zoster. I had them very low down in my groin area. My gp said its a possibility this could have caused v but usually the nerve pain associated with shigles would have come sooner. I have also been tested for herpes type 1 and 2 all negative. The consultant advised me herpes outbreaks would be shorter and not as painful as v. Im very confused by it all and im looking for the answer every day. My mum has crohns disease psoriasis and anemia all problems with autoimmune im wondering if thats related to me.

I have actually wondered this before myself. I have tested negative multiple times. I have also heard people say before that it might be related to HPV. I tested negative for that too. I do, however, have cold sore outbreaks, or herpes of the mouth, and I've often wondered if that could somehow cause the V, because I know when I get cold sores, I have pain all over and feel very tired, etc. So I do believe it is systemic, even though they say it is just the area on your mouth that is affected.

Hi,

I definately think that all these medical conditions are connected. Apart from the diagnosis of vulvodynia 21 years ago (I too have had tests for herpes, all negative), I further developed fibromyalgia, litchen planus (ulcers in the mouth), IBS and more recently thyroid antibodies. My own body is making antibodies and destroying my throid. Definately when I am stressed, all my conditions are worse.

Helen

Helen, I agree with you that stress is a HUGE factor! I think stress triggered me to have vulvodynia again. I'm trying everything I can to de-stress and think positive. I am so sorry you have suffered so long. It's really so unfair.

I think this is very true for some. One way to teat it is to take an antiviral (valtrex) and see if it helps