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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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 …

Comments: 22


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

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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
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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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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