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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» 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

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

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). …

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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

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


Looking for women to talk about their experiences

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Looking for women to talk about their experiences

Post  ellie12 on Fri May 17, 2013 12:26 pm

Hi there

I am a freelance journalist and vulvodynia sufferer and I am looking to write a long feature about the condition to pitch to womens magazines. When I first began to experience symptoms aged 19, I found it very difficult to get a diagnosis from doctors and had never heard of the condition myself. I would like to help young women like I was with their diagnosis by explaining the condition fully in an article.

I need some case studies - although I do already know some other sufferers who I will be interviewing. These people could be young women, post childbirth sufferers and post menopause sufferers. I want stories from people who's condition has been caused by all manner of things. I also need to talk to experts and support group members if anyone would be willing to discuss the effect that emotional support has on sufferers. Please do let me know if you would be interested in helping me out with an interview - I am available over Skype, email or phone at any time. My email address is eleanorfrancesslee at gmail dot com if you'd like to get in touch.

Best wishes,

Ellie Slee

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Hello

Post  msginayorke on Sat May 18, 2013 1:20 pm

I would love to share my experience in order to help others, how do I get in contact with you?

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Re: Looking for women to talk about their experiences

Post  ellie12 on Sat May 18, 2013 4:06 pm

I've sent you a private message Smile

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Re: Looking for women to talk about their experiences

Post  msginayorke on Sat May 18, 2013 4:22 pm

I sent you one back, let me know if you didn't get it!

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Pain Down Under

Post  Melbourne lyn on Wed Jun 05, 2013 6:45 am

Hi, my name is Lyn and I live in Australia. I am 60, a fitness fanatic and a surviver of sexual abuse. The discomfort began less than a year ago and has made my anxiety and depression much worse. For the last couple of weeks I have tried managing without any exercise at the recomendation of friends to no avail but half a sedative three times a day does seem to be helping. I have seen a phsyiotherapist, a psychologist, a gyno and a pain specialist (plus others). They all seem to agree that lowering my stress would help but that is easier said than done. The Royal Women's hospital in Melbourne is working on the issue for young women but the post-menopausal women are not being included in the trials at this stage. The pain has reached the level of acid or broken glass and is making my life a misery but the sedative is helping although I worry about my driving reaction time. The internet seems to be almost the only place I can find people who have heard of the condition which again makes things more difficult. An ointment made from coconut oil and shea butter combined with some soothing essential oils that my friend has put together seems to be helping me and doesn't stain my clothes which is also beneficial. I would love to hear from others with their ideas on the subject and am happy to take part in your article if you would like my input. I look forward to hearing from you, best wishes, Lyn.

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Melbourn lyn

Post  BpCookie on Thu Jun 06, 2013 6:39 pm

Lyn, You said that your taking a sedative, what is the name of the medication? I have vulva lichen simplex chronicus which causes burning pain, which in turn has caused depression. I take Lorazepam once or twice a day, just to calm me down. Also I have heard good things about coco nut oil, I think Im gonna try it.

take care

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Re: Looking for women to talk about their experiences

Post  Alana3 on Thu Jun 06, 2013 8:34 pm

Be careful with coconut oil, it has the ability to cause infection and yeast because it traps bacteria in and won't let your vagina "breathe" normally. Which can cause BV, yeast, etc etc. Not fun! And if you ingest it, very high in calories and can cuase you to break out. Just be aware of what you're putting where. It seems harmless, but in reality, can cause all other problems you might not want to play with.

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Re: Looking for women to talk about their experiences

Post  BpCookie on Thu Jun 06, 2013 9:24 pm

Hi Alana Sweetie, Oh no, I have enough problems with YI and BI. Thanks for the heads up. I use A and D ointment. For some reason the A and D ointment makes my vulva feel a bit better and protects it from the darn sweat and any discharge I may have. My Gyno told me to use it, Ive used it for two years now, I hope its not gonna cause me any problems. uuugggghhh All I need is more problems with my burning bush, with Mrs. DoubtFire, with Vagisorous......I could go on and on. lol
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Re: Looking for women to talk about their experiences

Post  Alana3 on Thu Jun 06, 2013 11:50 pm

Yeah ew its an oil probably not the best thing to put there

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Re: Looking for women to talk about their experiences

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