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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


another website!

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another website!

Post  naomi on Mon Aug 02, 2010 8:17 pm

http://www.vulvodyniasupport.com/guest1.html


"Vulvodynia interferes with daily functioning, such as sitting walking and most other physical activity. It often affects one's ability to engage in sexual activity. It can impair one's ability to work, and participate in a social life. These limitations often lead to depression and thoughts of suicide.

We need ongoing and multiple approached researchers to learn the underlying cause of Vulvodynia. We need proper care and medications that help control the pain and discomfort, that helps all forms of Vulvodynia patients to cope with their daily lives. We need dedicated professionals to start and continue researching this disease until a cure is found. We need compassionate professionals to join in the fight against the ignorance that engulfs the sufferers of the disease. We need dedicated people who are committed to figuring out what causes Vulvodynia, and how to treat and cure Vulvodynia.

It has been over 100 years since the "discovery" of Vulvodynia and yet Vulvodynia is virtually ignored by the medical and research community. It is time for the medical and research community to step into the 21st Century and recognize and legitimize our disease and pain by forming a national research foundation that will continually study this disease until a cure is found. It is time to stop our suffering!"

Lauren Kunis New York City USA



Here-here! I completely agree Smile

could we not go public and DEMAND more research into this area instead of researching into...oh I dont know I cant think of anything witty right now!!! Very Happy
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Re: another website!

Post  Sarah001 on Mon Aug 02, 2010 8:30 pm

I'm not quite sure if that website is still active, the guestbooks are from years ago and the link to the recent one doesn't work on my computer at least. The most recent guestbook seems to be from 2002 so it looks like the campaign with the open letter was a while ago and clearly didn't help or we wouldn't all be wondering how to help ourselves now!!
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Re: another website!

Post  maggie on Mon Aug 02, 2010 8:34 pm

100 years since the discovery of vuivodynia, yet the GP's have never heard of it, i can't belive that it's been around that long.

maggie x

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Re: another website!

Post  naomi on Mon Aug 02, 2010 8:38 pm

DOH!

Well I have plenty of time on my hands to keep plodding along with the research and pestering specialists now I have lost my job through this!!!!!! grrrrrrr

On my good days I feel up to it so will continue with my plodding. Hopefully will uncover some answers for us

xxx

these support groups might still be alive...maybe!
http://www.vulvodyniasupport.com/support.html


Last edited by naomi on Mon Aug 02, 2010 8:42 pm; edited 1 time in total
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Re: another website!

Post  maggie on Mon Aug 02, 2010 8:41 pm



Well done you, keep up the good work. thanks for info.

maggie

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Re: another website!

Post  naomi on Mon Aug 02, 2010 9:45 pm

RIGHT! try this link folks...

http://vulvodyniasupport.com/
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Re: another website!

Post  Sarah001 on Tue Aug 03, 2010 11:31 am

I applied to join the yahoo group for vulvodynia and finally got accepted after a few weeks only to find I'd stupidly forgotten my yahoo account details and couldn't sign in! I've reapplied but heard nothing yet strangely I'm receiving emails from some members of that group in my email account?! Some seem to be spam and others seem to be genuine asking for advice (which I don't really have). I'm not totally sure it isn't the same stuff that's on Dr Glazer's site in the guestbooks, I'll have to wait and see if they will accept me again and perhaps I can remember my details this time! Embarassed
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Re: another website!

Post  Sebby (Admin) on Tue Aug 03, 2010 11:40 am


I did the same thing Sarah! I applied for the yahoo group but never got nothing back and then forgot my log in details! Oh well lol

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Re: another website!

Post  Sarah001 on Tue Aug 03, 2010 11:57 am

I'm pleased I'm not the only airhead!! Laughing I made a point of writing them down this time but as they haven't replied I probably won't need them now I've got them! Rolling Eyes
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Re: another website!

Post  Sebby (Admin) on Wed Aug 04, 2010 9:20 pm


Why dont the plonkers reply! Question lol
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Re: another website!

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