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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


vulvodynia and herpes connection

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vulvodynia and herpes connection

Post  alice77 on Sun Apr 15, 2012 11:45 pm

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 Smile

alice77

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Re: vulvodynia and herpes connection

Post  shortstuff on Fri Apr 27, 2012 10:49 am

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?

shortstuff

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Re: vulvodynia and herpes connection

Post  pepper7 on Sun Apr 29, 2012 9:51 pm

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. Crying or Very sad

pepper7

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Re: vulvodynia and herpes connection

Post  penfebruary on Sun May 06, 2012 5:23 pm

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

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Re: vulvodynia and herpes connection

Post  Kate1981 on Wed Sep 12, 2012 8:49 pm

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.

Kate1981

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Re: vulvodynia and herpes connection

Post  LillyK on Thu Sep 13, 2012 5:15 am

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.

LillyK

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Thyroid antibodies

Post  scrumptuous on Fri Sep 14, 2012 7:20 pm

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

scrumptuous

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Re: vulvodynia and herpes connection

Post  LillyK on Sat Sep 15, 2012 4:41 am

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.

LillyK

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Re: vulvodynia and herpes connection

Post  Ouch123 on Tue Dec 08, 2015 11:24 pm

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

Ouch123

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Re: vulvodynia and herpes connection

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