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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

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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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Join date : 2011-12-12

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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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