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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 …

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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.

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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


Meet up?

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Meet up?

Post  naomi on Tue Jul 13, 2010 9:04 pm

Arrange a meet up sometime folks?

I haven't got Skype and wouldn't have a clue how to set it up or use it!

I love this site thanks Sebby for creating it. Feels like a little family, so supportive

xxx
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Re: Meet up?

Post  Sebby (Admin) on Tue Jul 13, 2010 9:31 pm


Thanks Naomi, A meet up would be fantastic.

Where are all you girls from??? Im in Dagenham Essex (poor me lol) near London tho

Sebby
xxxx
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Re: Meet up?

Post  naomi on Tue Jul 13, 2010 9:37 pm

I'm Cheltenham in Gloucestershire (nr Bristol). Can drive anywhere though as long as my trusty sat nav is with me Very Happy

bed for me, night all xx
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meet up.

Post  maggie on Wed Jul 14, 2010 11:31 pm

Hi, i'm in forest gate east london, i,m not far from you sebby, your all welcome to meet at my place.
maggie xxx

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Re: Meet up?

Post  Sebby (Admin) on Thu Jul 15, 2010 7:16 am


Oh wow Maggie your not far at all! I work for Newham Council organising the special needs transport.
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Re: Meet up?

Post  Sarah001 on Thu Jul 15, 2010 11:34 am

Well I'm miles from all of you and badly restricted by my other health issues so I'll have to pass!
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Re: Meet up?

Post  julia on Wed Jul 28, 2010 5:40 pm

Just thought I'd re-open this post.. I live in Kettering, Northamptonshire and would love to meet up with some of you, either here there or anywhere!

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Re: Meet up?

Post  naomi on Wed Jul 28, 2010 5:48 pm

Me too I'm easy! Love a good road trip! (with this condition it means I have to stop for more Costa coffee stops!!)

People ok to meet up in say a months time ish?

We could do a random day in London? or meet at a stately home? or someones local cosy pub?

Be warned...I will arrive with my big level arch file of gynae information...do not be afraid!
xxx Very Happy
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Re: Meet up?

Post  julia on Sat Jul 31, 2010 3:45 pm

Shall we try to confirm a day soon? I work Monday to Friday, so a Saturday during the day in London would be perfect for me.... what you all reckon?

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Re: Meet up?

Post  Sebby (Admin) on Sun Aug 01, 2010 3:25 pm


Yes a Saturday is perfect for me as I also work Monday to Friday and can get to London no problem

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Re: Meet up?

Post  naomi on Sun Aug 01, 2010 5:48 pm

hows about a sat near the end of aug? and near to Sebby and maggie? where do you guys live again? I'm up for crashing at a travelodge (people are welcome to share a room to keep costs down, I dont snore!) and having a night out if anyone fancies it? might as well throw a meal in there too if anyones up for that?...just something to look forward to then Smile
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Re: Meet up?

Post  naomi on Tue Aug 10, 2010 7:12 pm

Sat 11th Sept...meet up then ladies?!!
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Re: Meet up?

Post  Sebby (Admin) on Tue Aug 10, 2010 7:56 pm


Ok Sat 11th sounds good to me xxx
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Re: Meet up?

Post  naomi on Tue Aug 10, 2010 8:08 pm

ace! thought id just throw a date in there! I'm happy to come down to ur and maggies part of the country! xxx
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Re: Meet up?

Post  Sarah001 on Mon Sep 20, 2010 12:44 pm

Did you girls meet up? How was it meeting other board members face to face?
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Re: Meet up?

Post  jules on Tue Sep 21, 2010 2:54 am

Hey...I feel left out. No road trips from the U.S. did you all meet? If so, how did it go?

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Re: Meet up?

Post  Sebby (Admin) on Tue Sep 21, 2010 7:07 pm


Hey Sarah, yeah me and Naomi met up!

It was a random and fun nite!!

We went up to London and got chatted up by two American fellas! lol We can't remember their names now!!

It was great to meet up face to face...its wonderful to get to know and speak to those who understand you condition as it really makes you feel less alone with it!

Sebby
xxx
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Re: Meet up?

Post  Sebby (Admin) on Tue Sep 21, 2010 7:08 pm


Oh Jules its you!!

I got confused with the name change! lol

Laughing
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Re: Meet up?

Post  jules on Sat Sep 25, 2010 5:05 pm

Yes, I changed my profile name. I didn't want some of the identifying info. I had included w/ my profile name (my initials). so glad you met and you were hit on by American men. Must not have been too memorable if you can't remember your names. Hope everyone is hanging in there.

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Re: Meet up?

Post  Sebby (Admin) on Wed Sep 29, 2010 9:15 pm


Well I got a friend request from one of em on facebook!! lol Aparently he is called Andrew!! Lmao
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Re: Meet up?

Post  jules on Thu Sep 30, 2010 3:29 am

ha ha! that's great. i'm not your only American facebook friend, huh?

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Re: Meet up?

Post  naomi on Sun Oct 03, 2010 9:33 pm

hello all!

back from hol with my folks it was so relaxing just going to the beach and BBQ's in portugal. Def what the doctor ordered!

Yeh meet up was funny!! I remember he had tinsey hands/arms?...or am i making that up??! he couldnt touch his shoulders?! And some random mini festival on the banks of the river thames! Glad we didnt go off clubbing with them though as I would not have been able to drive back home the next day.

Ooooooowa Sad I really wished we lived close to each other and could met up regularly. Its so random how u meet people!! Ur ace company though Sebby, felt like Ive known u forever!!

We need to arrange another meet up! If anyone has any suggestions as to where? Im always up for a road trip and dont mind driving, only thing is I need a few weeks to save up pennies....benefits dont really add up to much. Unforch we cant cross the ocean though to visit u guys in the US Sad
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Re: Meet up?

Post  jules on Mon Oct 04, 2010 1:01 am

Naomi, it sounds like you had a great time. I would love to go to Portugal. It hear there is a high alert for Americans to travel in Europe and the UK. Also the British are being warned about traveling. Those damn terrorist. Get a life!!! I would really have to save up my pennies to come and see you all. Naomi, how long of a drive is it for you to meet w/ Sebby? It sounds like you two are pretty close in distance?

Hope you all are w/out pain today. One day at a time. I went to a big event last night...dinner/dancing/drinks etc. I could barely sit. However after three Martinis...or so, i was feeling pretty good.

Let me know how your meeting is...it would be great to meet you all in person. If you are ever in the U.S. in my state..i would love to meet you. Not sure if i will ever get my husband to travel to England, unless of course, you all have casinos, then maybe :-)

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Re: Meet up?

Post  Sebby (Admin) on Tue Oct 05, 2010 6:51 am


Yes Naomi he did have little hands and arms!! haha
Laughing

Yeah it does feel like we have known each other for ages!

Would be great to go on a road trip and meet up with you other girls.

My mums disabled so as long as I can make sure she is ok and has someone else to hand if she feels unwell then im up for it!

Sebby
xxx
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Re: Meet up?

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