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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


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 : 39
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 : 31
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 : 39
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 : 39
Location : Rome

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

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Re: Hi from Rome

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