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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

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


My Story and My Questions

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My Story and My Questions

Post  junobug85 on Sun Apr 22, 2012 11:43 pm

After 4 months of being sexually active with my boyfriend I got my first UTI, followed by my first yeast infection, follow by my first bacterial vaginosis infection, and from that day on I never felt any better... I constantly thought I had a yeast and bladder infection was prescribed diflucan over and over again and popped Uristat like candy. I thought I had herpes or gonorrhea but after dozens of OBGYN's telling me there was nothing wrong with me, my boyfriend was probably well endowed, I eating poorly, not exercising enough or my pants were too tight, I saw a Uro-gynecologist who told me it sounded like I had vulvadynia. This was the best news of my life to find out that someone believed me and that there was help and I wasn't crazy. I saw Dr. Schulze in north NJ who was amazing and for the past 4 months, I have religiously been on a low oxidant diet (which is challenging!), I take xanex, perideum, and use estrogen cream. All these treatments have helped significantly, but I still have soreness, sting, pain and bladder infection symptoms. I am considering the surgery, but Dr. Schulze does not take my insurance so I need to look into other doctors. My first question is does any one have any recommendations because I can't find any other doctors that even believe in this condition. My second question is what are my chances of the surgery not working? I have had vulvadynia for 5 years now and I have read that the longer you wait, the more chance you have of the surgery not working.

junobug85

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Re: My Story and My Questions

Post  LizLemonny on Sun Apr 29, 2012 8:53 am

Why are the doctors still so ignorant even specialists - it is well documented now. I remember all those diagnoses from 1985-90 when I was trying to find out what was wrong with me. Do you have the pain constantly (vulvodynia) or just during and after intercourse or friction such as running (vestibulodynia).

LizLemonny

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Re: My Story and My Questions

Post  junobug85 on Mon Apr 30, 2012 12:26 am

thank you for responding! This past November my symptoms seemed to be around the clock, but with the estrogen cream and xanex the pain and discomfort comes and goes and is usually triggered by friction. I have found some doctors in my area that take my insurance and believe in vulvadynia so I am very hopeful.

junobug85

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Re: My Story and My Questions

Post  LizLemonny on Thu May 10, 2012 4:12 pm

Yes - once it is triggered it does take a while to settle down. It makes sense to use the creams before going for walks and certainly before sex, so that you don't get this problem or you lessen it as much as possible. It sometimes feels to me as though the pain creates more pain. Lidocaine is good. I haven't tried estrogen but I have been thinking of trying it.

LizLemonny

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Re: My Story and My Questions

Post  junobug85 on Thu May 10, 2012 5:29 pm

I feel like I constantly am swollen and have an infection. The glands around my bladder feel swollen as well and make me feel like I constantly have to pee. It is challenging to fall asleep and I wake up a lot during the night feeling like I am going to wet the bed. It is really depressing... I just want to feel normal Sad My other problem is is that when my symptoms really flair up, I feel it in all parts of my private area, not only my vestibular glands, like a fire..... it burns a lot. Sometimes I test for Yeast Infections and I have tested for BV 3 times in 5 years, but most of the time I do not have an infection. When this happens, the creams, xanax and peridium do not really help. I just ordered folic acid and coconut oil tablets because one person in this blog said they help.

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