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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


Hi from Rome

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Hi from Rome

Post  Aida Blanchett on Wed Feb 22, 2012 5:48 am

Hi everybody,
I introduce myself, my name is Aida, I am from Italy, city: Rome.
I found this forum some months ago.
I am the admin of Vulvodinia.info , with a forum section very much like to this , which I founded two years ago.
Please, just don't pay attention to my poor English. sunny
I suffer from vulvodynia from June, 2, 2001. My story is, useless to say, just another v. photocopy, the difference being only in the time spent in this distress, alone, as everybody who deals with this neuropathic pain, travelling from that awful day, desperate, from doctor to doctor, treated as a mad woman, hysterical, e bla bla bla, the same (im)perfect story. I was 23 at that time. All my life went destroyed. I was a solar, happy person. This desease made me almost crazy, for some years. Then, I refused to give in and started fighting, as I am a fighter, indeed.
I've read in here sometimes and always said to myself, I have to join in in that forum too, as I am present in many virtual places in Italy, finally I managed to subscribe here too.
I've linked this forum some time ago, as you can easily see in the forum place.
In Italy, I am doing all the best I can to shout out about our condition through my site & forum, my videos on Vulvodinia.info channel (me, Beodicea), through documentation as you can see here: on scribd.com / doc/81599994 / La-Vulvodinia and through many other ways. All these things I hope to translate in English as soon as I can. I suffer as well from fibromyalgia, which is too a neuropathic condition in comorbidity with the "dynias" family. It is not a rheumatic problem, as many doctors suppose.
My job deals with cystitis as I do make information for a natural compound which is d-mannose based. How many times I have thought, would be there something so easy to take to make this plague disappear!
I have read many things about creams and other ointments, and in these years I have tryied almost everything. I do not tolerate anything apart gels or creams with a totally "green" INCI composition (so important because one of the con-causes which triggers v. is chemical, so I do eliminate parabens and other chemical components). I have the form of v. which is defined "mixed": spontaneous and provoked.
I am determined to make all that I can do to spread the info about vulvodynia in every place, fisical, virtual, any kind I can get. You know well, if you search on Pubmed, you'll see there are only 300 publications about our desease.. what about the reserach? No research at all, in my modest opinion, don't you think? Something here in Italy *perhaps* is moving on. I just keep going on in this struggle in making our voices be heard. I would like so much to cooperate with You.
Bye, for now, and just never back down.
Wish You the best,
Aida (Beodicea) I love you
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Aida Blanchett

Posts : 6
Join date : 2012-02-22
Age : 40
Location : Rome

View user profile http://www.vulvodiniapuntoinfo.com/

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Re: Hi from Rome

Post  ButterflyLiz on Sat Feb 25, 2012 12:43 pm

Hi Aida, nice to meet you!

It’s great to see all you are doing to raise awareness. I am on a mission to raise awareness however I can, too (started a thread about it here - http://www.vulvodyniasupportforum.com/t649-taking-action) and was thinking of making a website with my experiences and knowledge… after 10 years, that amounts to quite a lot! Even with the enormity of the web there is still a lack of quality information out there and I think that as patients, we are probably the ones best placed to provide it. When the UK’s National Health Service won’t even include “vulvodynia” amongst the medical conditions on its website, I’m starting to think we’re the only option.

Btw I think there was a typo in the web address you posted, should it be http://www.vulvodiniapuntoinfo.com/?

All the best to you, wishing you pain-free days,

Liz x
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ButterflyLiz

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Age : 32
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I quote all!

Post  Aida Blanchett on Sat Feb 25, 2012 7:00 pm

Hi Liz, I quote all the things you've said, me too, in the same condition, eleven years of vulvodynia, started in 2001, diagnosed only in the late of 2005! Your thought is my thought, so two years ago I founded the site, yeah the link is incorrect, just erase question point (oh I always make mistakes when I type !!)
Yes, I've read that thread and, I must confess, I starded crying, as usual, cause we all share the same, exactly same story... at least 16% of female population in a range between 18 and 64 of age is fighting with v, these are data from medical literature.
The Blue Butterfly is the logo of my site. It's a symbol of antiquity, when the Goddes ruled this earth. It is also a symbol of good fortune. And it's also the symbol of the Soul (psyké). It's the symbol of freedom.
I encourage you to go on in this project, as I did and do. I agree, there is an enormous, tremendous lack of information about vulvodynia, and so, said to myself, that is non acceptable! We're in 2012! Still even know, too many women have to browse the Holy Google to try to understand what's going on with their vulva!
Oh, I admired you for the things you said: it is far more productive to move on and make information spread everywhere!
If you need my support even for scientific bibliography or anything else, you can count on me for sure!
So, let's stay tuned cheers
As a friend of mine says "vulva libera per tutte", free vulva for all of us!
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Aida Blanchett

Posts : 6
Join date : 2012-02-22
Age : 40
Location : Rome

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Thank you and Welcome!

Post  sadone on Mon Feb 27, 2012 11:35 pm

So glad you are posting here and being active about publicizing this condition. I really wish that V could be household word. It's terrible how it is such a hidden condition when it is so prevalent. I applaud you and your efforts to get the word out!!!

sadone

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Re: Hi from Rome

Post  Aida Blanchett on Wed Feb 29, 2012 10:44 am

Thank You dear.. I know what you mean..
Everybody must know about vulvodynia! Oh, I'll never stop, you can be sure.
Have a good day I love you
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Aida Blanchett

Posts : 6
Join date : 2012-02-22
Age : 40
Location : Rome

View user profile http://www.vulvodiniapuntoinfo.com/

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Re: Hi from Rome

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