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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» 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!
Thu May 17, 2018 11:11 pm by Kezz

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

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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


Vulvodynia is a secret

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Vulvodynia is a secret

Post  Hopeitworks on Sat Aug 05, 2017 8:25 pm

Hello everyone,
Vulvodynia is my secret because how do you tell friends and family. I can't picture going to lunch with friends and just blurting out "my V burns all day". I can imagine the looks I may get. The only people I've ever told are the many doctors I've seen, my husband, and you all. It's not like I can walk into a meeting at work and say today's a bad day my V hurts. Like you can do with a headache. I recently had vesectobltmy surgery and had to lie about what kind of surgery I was having to my work. I don't like to lie, but what other choice did I have. The stigma that comes with any type of symptom that involves burning of V equals infection in most people's minds. This is why thus condition makes us feel so alone and worthless. Please share your comments about telling others.

Hopeitworks

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Re: Vulvodynia is a secret

Post  tinkerbelle2 on Sat Sep 16, 2017 1:22 pm

I know exactly what you mean! It's not the kind of thing you feel you can casually just drop into a conversation. I have told a few close friends about it and they have been empathetic but it can still be a bit awkward. A couple of them have even had a similar thing, but theirs usually went away on it's own. I feel like I don't really wanna bring it up again and be like "you know that thing I told you I had years ago? well , I've still got it!!" I think it's a difficult thing for people to advise you on or even offer words of encouragement if they don't relate or understand it themselves. But sometimes even just being there to listen can be enough.
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Re: Vulvodynia is a secret

Post  aspaceodyssey on Fri Jan 19, 2018 5:03 pm

absolutely. it is such a lonely condition and that makes it all the more difficult. but know that you are never alone. there are many of us out there dealing with the same and we all have your back in spirit, even if we sadly can't be there in person. most people in my life including my parents have no clue that I've been dealing with this for almost 15 years now...crazy. but I have a supportive partner and a couple close friends who do know and that's all you need. I recently contributed to a book that included women's personal experiences of vulvodynia as well and talked about the lonely, isolating side of this journey. it was scary to even write about it anonymously, but so cathartic, and I felt proud knowing my words might help others like us feel less alone. I'm not sure if the book was published yet...now I want to follow up with the author and find out!

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Re: Vulvodynia is a secret

Post  ryn207 on Sat Jan 20, 2018 1:59 am

I totally know what you mean. I'm lucky to have some friends, family, and a boyfriend that I can talk to, but I do feel like I'm being a downer sometimes. I'm an open book when it comes to a lot of things so while I felt I could tell those that I'm close with, it still feels a bit awkward. They're sympathetic, but they can't imagine what it's like so they typically don't know how to respond after a minute or two into the discussion. Most aren't comfortable with asking questions so you're the one that has to always bring it up if you want to vent which makes you feel like a bother. I might go months without speaking about it to friends (even though I feel the symptoms everyday) so when I do bring it up it's like they forgot I even have this and can't believe I'm still in pain! They're always shocked because they've also never heard of something like this.

You should definitely keep using this website since it's filled with women who know exactly what you're going through. Everyone needs to vent at some point in order to stay sane.

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Re: Vulvodynia is a secret

Post  fairlight10 on Sat Jan 20, 2018 11:45 am

This forum is so valuable for women with this condition. We can all speak openly without being embarassed. When I found this forum, I didn't feel so alone.

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Re: Vulvodynia is a secret

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