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» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
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» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

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 …

Comments: 0

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

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 …

Comments: 5

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 …

Comments: 0

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Diagnosing Vulvodynia

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Diagnosing Vulvodynia

Post  amh521 on Thu Apr 09, 2015 12:06 am

Does anyone know if it's possible to definitively diagnose vulvodynia? From what I have read, it seems like doctors arrive on vulvodynia when tests for all other infections/skin diseases come back negative. I have yet to be diagnosed, but after all the research I've done, I firmly believe this is what it is.

After 7 months of stinging and itching, I had a vulvar biopsy last week. It hurt a LOT and a week later, I am 99% recovered. I'm also on my second week of a low dose antidepressant, but I haven't seen a real improvement yet. My doctor says I'll probably get the biopsy test results back in another week, but I still don't really know what those results could possibly say. I would love to just get this diagnosis, because I've read that getting diagnosed with vulvodynia can be half the battle.

I am at a total loss. I definitely have moments where I feel like this is just what my life is going to be like. I'm sure a lot of people feel this way - you're just tired of thinking and talking about your vagina! A year ago, I never gave my vagina any thought, and now I think about it nonstop, every day.

Thanks for any help anyone can offer.

amh521

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Join date : 2015-04-08

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Re: Diagnosing Vulvodynia

Post  jen007 on Tue Apr 14, 2015 7:32 pm

Hi amh521,

I was diagnosed around 2012 by a vulvodynia specialist. There is no sure fire way to diagnose vulvodynia. You can't take a test that will definitively say you have vulvodynia. It's when you've tried it all and nothing seems to work pretty much. I had gone thru quite a few doctors before anyone could give me an answer. I had to do most of the research myself because no one really knew what to do with me. This is because vulvodynia is not a widely known disorder even though many women suffer with it. Also, it depends on where you are from. I think being is the U.S it's a little easier to find a specialist. I've read about a lot of women in other countries who struggle to find the proper care.

I never had a biopsy or anything like that. I had done every swab test imaginable and blood tests with no results accept for chronic yeast infections - some how tied to my vulvodynia. Every woman is different. Different things work for different people/ bodies. Some women use medications that actually help them, some use homeopathic remedies that help and others, like myself, have surgery - aka a vestibulectomy.

Sometimes it feels like you're stuck in a maze. Vulvodynia is a confusing disorder. No one knows exactly why it happens to people or 100% what causes it. One day, hopefully, there will be better treatments for it. As for now we all have to find what works for us. I was once where you were, constantly thinking why and how. At one point I just had to stop thinking and start doing. I did all the research I could and found the proper support system. This site really helped me thru those dark times.

I hope this was helpful!

-Jen

jen007

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Join date : 2012-11-05
Age : 25
Location : U.S.A

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