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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?
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» 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
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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

7 year old with vulvodynia

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7 year old with vulvodynia

Post  KHarris on Tue Jul 27, 2010 12:39 am

My 7 year old daughter has had vulvodynia since Feb 2010. I'm looking for othere mothers of children with this condition, as it's hard to find women in my shoes. Thanks for your help and good luck to everyone!


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Re: 7 year old with vulvodynia

Post  Sebby (Admin) on Tue Jul 27, 2010 9:12 pm

Welcome Kimberly,

I do hope you can find other mothers dealing with this.

Even so I hope we who have Vulvodynia can also offer our support and advice to you.


Sebby (Admin)

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5 year old vulvodynia

Post  Vickie22 on Sun Feb 26, 2012 8:27 pm

I think my daughter has this too. Have you found any relief or help yet? We have tried several Doctors and finally are going to a pediatric gynecologist tomorrow. It is red, burning pain in the vulva area. Very painful. I think I have linked it to her diet. She can't have fruit, citric acid, tomatoes, or spicy foods like sausage. We have had very few pain free days. Worse at night. Usually once a week it is hard to get her to school because of her pain.
I'm finally sending her own lunches. She can't have candy with citric acid or chocolate I'm now thinking causes a flare. We have learned from trial and error that sodas have phosphoric acid in it if not citric acid. So, we cut them out. Some flares last 1 day and is better by the next morning, but start all over with something else she may have eaten. The worst flares are 4 days and then some relief. She wants to go the Dr. but nobody can help us. We tried all sorts of creams, but they seem to hurt too. So, switched back to nothing but water and vaseline. We have seen a urologist who said maybe IC, but she does not go tot he restroom frequently. The IC diet seemed to work and help, but I just discovered this Vulvodynia and it seems to hit the nail on the head with her. There is a vulvodynia diet with low oxylate foods. So, now I'm trying to figure it out even more. It is so nice to see she is not the only child searching for help. We have had it since she was 2 that I know about, when we tried to get her potty trained as quick as possible, because I thought the burning was the diaper rash or urinary infection. But, the UI results always came back negative.

If anybody can help me please let me know. We have seen a dermatologist who was the first to believe me that diet caused her to flare. The others did not help: Urologist, gasterointerologist, pediatrician (of course), 2 allergist, even consulted an online doctor and soon a pediatric gynecologist.


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Re: 7 year old with vulvodynia

Post  mmorgan on Tue Feb 28, 2012 4:45 pm

I know there was a lady whose twin boys had penial pain and she was a firm believer in the low oxalate diet. Check past posts.

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Reply to child with vulvodynia

Post  Debbie627 on Tue Jul 10, 2012 3:30 am

Do you use a liquid laundry detergent like Tide free and gentle? Most liquids contain an ingredient called propylene glycol, which caused my vulvodynia. This ingredient is also in sodas, ice cream, cake mixes etc. read your labels. I'd be happy to have a personal chat with you or others if you want to explore this topic further. Let me know and I'll post my email address.

Also, most medicines prescribed by doctors to cure this condition also contain propylene glycol...read your labels and avoid all ointments and creams containing this ingredient. You will see the results within 24-48 hours.

Would love to hear how this turns out for you.

Last edited by Debbie627 on Tue Jul 10, 2012 2:45 pm; edited 1 time in total (Reason for editing : Spelling)


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Reply to child with vulvodynia

Post  Debbie627 on Tue Jul 10, 2012 3:35 am

Also be aware of wet wipes. They also contain propylene glycol.

I also found that the pain was worse at night. The reason was because I was applying al of the medicines during the day that were creating a cumulative burning sensation throughout the day. If any of you of you find that your condition is better In the AM and worse at night, then you need to consider propylene glycol as the root cause of the problem.

Last edited by Debbie627 on Tue Jul 10, 2012 2:44 pm; edited 1 time in total (Reason for editing : Spelling)


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Re: 7 year old with vulvodynia

Post  kellybeth on Thu Aug 16, 2012 11:48 pm

hi my daughter is 8 and was diagnosed with vulvodynia around a month ago. it all started when she was 3 years old and was always put down to urine infections. she is currently undergoing pain management at great ormond street hospital. she has been put on 10mg amatriptline,this does not help her one bit just makes her into a zombie :-( she spends nearly every night in pain,its heartbreaking. i wish your little one all the best
kelly xxx

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Re: 7 year old with vulvodynia

Post  LillyK on Sun Sep 02, 2012 5:05 am

I'm so sorry your little one is going through this!! I wanted to second the recommendation for free and clear type detergents. Also, NO baths, ever. Have her take a shower. All white 100% cotton underpants. And lots and lots of water. These things all helped me. Also, if she isn't terrified of it, I highly recommend acupuncture. It helped me be pain-free after just 4 months. You may also want to take her to a chiropractor to see if maybe she is out of alignment somwhere and that could be affecting her. Poor baby. This is hard enough as an adult, and as a mom myself, I know you are hurting for her. I hope you have found some success since your last post.


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Re: 7 year old with vulvodynia

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