Log in

I forgot my password

Latest topics
» What's next?
Today at 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Hi from Rome

Go down

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
avatar
Aida Blanchett

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

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

Back to top Go down

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
avatar
ButterflyLiz

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

View user profile

Back to top Go down

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!
avatar
Aida Blanchett

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

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

Back to top Go down

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

Posts : 53
Join date : 2011-12-12

View user profile

Back to top Go down

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
avatar
Aida Blanchett

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

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

Back to top Go down

Re: Hi from Rome

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum