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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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


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

Suffering for 10 months

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Suffering for 10 months

Post  Juliaprincess on Mon Mar 19, 2012 11:36 pm

My pain started 10 months ago and I thought I had a urine infection. I got antibiotics but it didnt clear up and then test showed I didnt have any infections. I went to the GUM clinic and got tested for everything and it was all clear. I saw a skin specialist 2 weeks ago and they diagnosed my with Vulvodynia. I was told to take Nortriptyline at night time. I have taken 10 mg for 2 weeks and now as of tonight I have been told to up it to 20mgs increasing by 10 mgs every two weeks until a max of 40mgs a night if I can tolerate.
I did take amatriptaline before but this had side affects for me.
I have pain all the time. My pain is mostly on the left hand side inner labia and also occasionally on the clitoris.

I hate to have this pain all the time and often take pain killers most days to get through the day. Some days I can tolerate the pain. I have had to have councelling due to a family problem and I am also talking to the councellor about the pain. I have found out that I have been abused as a child and also read this could be one of the reasons for suffering with Vulvodynia. I also have head aches which have eased since taking the Nortriptyline. I am hoping that with the increase in medication I will see some lessoning of the pain below.

Its affected my relationship now. I met someone 6 months ago and I am really happy in the relationship but I have had to tell him about the pain and he is very understanding. Sometimes I can have sex and other times the thought of having sex with the pain puts me off. For me luckily sex is not painful but having the pain has made me enjoy sex less and also put me off. I dont like being touched now as I did before.

The pain affects every aspect of my life. I have trouble concentrating at work now. I have a few close friends who know I suffer but its not easy to tell people and people dont understand anyway.

I have read others stories and feel so sad for myself and them.

I have recently changed to cotton underwear. I am contemplating using vasaline as I havent tried this yet but someone recommended it.

I have been referred to a pain specialist and am now waiting an appointment. I have read about the pudendal nerve affecting pain and am interested to get a doctors opinion on this

I have to say this is the worst pain I have ever suffered and I wouldnt wish this on anyone else. I am only 39 and have been quite sexually active in my life but havent settled down and had children. I have always wanted to but having this now makes me think I will never do this.

If anyone has any new advice then please pass on through this website. Really keen to help myself and others with this awful diagnosis.

One of my relatives thinks I have somatization disorder. Has anyone else heard of this or been told they have this?


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