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» Anyone been to see Dr.Claire Bailey in Birmingham?
Yesterday at 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Yesterday at 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


Just got diagnosed after living with VVS for about 3 years (I'm now 20)

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Just got diagnosed after living with VVS for about 3 years (I'm now 20)

Post  joyj0yjoy on Fri Jul 31, 2015 7:35 am

My name is Joy. The pain started roughly 3 years ago (no trigger to speak of, the only thing I can think might have helped start it is leaving in a tampon too long), and I kinda just tried to ignore it because my family doesn't have health insurance and my mom thinks doctors are the devil (yeah, she's crazy). I just stopped using tampons and tried to forget about it/hope it would go away on it's own. I wasn't what you'd call sexually active, so it was kinda easy to push it to the back of my mind. Today, I'm still a virgin (saving it for my husband) but I have since indulged in certain pleasures, or at least, tried to. My VVS made it impossible to allow any insertion due to the pain, (I would just cut my boyfriend off, tell him I wasn't comfortable with it, etc). I recently (by recent I mean like April of this year) became fed up, (what's a girl gotta do to insert a goddamn tampon without pain?!) and saved up for a gyno appointment. Ended up seeing a nurse practitioner because the gyno injured herself or something. This bitch looked up in me, poked and prodded, watched me writhe in pain, and then looked me in the face and said, "There's nothing wrong with you, your vagina just isn't ready for insertion. I'm sure this will go away once you start having intercourse."
I went back out to my car and broke down sobbing (I'm not a cryer). I felt so helpless. "What's wrong with me??" "Do I have to live with this?" "Is it so much to ask to enjoy foreplay as a virgin?!" It was awful. And I obviously told no one about it because it'd be embarrassing as hell - "Yeah, my vagina hurts upon insertion and I waited years to get it checked, and guess what, it's actually all in my head" NOPE. So I booked an appointment elsewhere ("Fuck that bitch, she's wrong, I need help" I thought). $277 later, (will probably be billed for more due to the diagnosis) I see an (ACTUAL!!) gyno this time, but she starts saying the same shit as the other lady, like, "Try spreading your legs really wide when inserting a tampon" and "maybe use lube" and "try stretching it out with a vibrator". Thankfully, she felt around enough to actually feel the inflammation and was like, "If you wait for Dr. Such-n-Such to get out of his C-section, he can probably give you better answers" so I was like, "Of course I'll fucking wait if it'll get me closer to some answers" so I wait and he comes and checks me out for like 60 seconds and says, "Describe the pain" and I say "Burning" and he said "Yup, I know this." and he sits me up and explains I have VVS, how they don't know what causes it, and there isn't a cure, but some treatments can help, though are a little spotty, and worst case scenario is having surgery. I was so RELIEVED to have an answer, a name, the makings of a solution. Not knowing, and feeling like you're crazy, is the worst part.
He prescribed a low oxalate diet, synalar (ointment) on area twice a day for 2 weeks, once a day for 2 more weeks, every other day on the 5th week and twice during the 6th week, plus citracal 2-3 pills daily for the same amount of weeks, then a follow-up appointment 8 weeks from now. I'm currently waiting on my pharmacy to get my drugs in, they say they'll be ready tomorrow. So that's when I'll start them. I am hopeful. The biggest worry is money. (It's over $150 for these drugs!!) I work 2 part-time jobs, one $10 an hour (about 20 hours a week) and the other $8.25 an hour (about 20 hours also). My health is important to me, GETTING BETTER is important to me! It's worth whatever it takes, but I don't want to go into debt over this, and health insurance seems like such a crazy expense for a plan that may not cover my pre-existing issue.
Thank you for reading, it feels good to lay it all out like that. I will probably tell my bestfriend and roomates, now that I know I'm not crazy. If you have any information/advice about the drugs I'll be starting or the diet or about the insurance situation, please share!
So glad I found this forum I love you

joyj0yjoy

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Re: Just got diagnosed after living with VVS for about 3 years (I'm now 20)

Post  Cami90 on Wed Aug 26, 2015 8:03 am

Hi Joy,
I know how you feel. I went through this for a couple of years, went to a lot of doctors (even in another state), tried a bunch of medications and spent a lot of money. The only thing that really cured me was surgery followed by physical therapy. But of course different things work for different people so you have to try everything else first.
As for the insurance, I had the same problem. All insurance companies I applied for would´t cover pre-existing conditions. So I found this government insurance called PCIP (Pre-existing Condition Insurance Plan). It was basically an insurance plan that covered anything. But I believe this was only available until 2014 due to the healthcare reform. The good thing is that now if you can get insurance through an employer they cannot leave out pre-existing conditions. The shitty part is that private insurance plans don't have to follow the same rule. But anyway, if you can get it through your job or maybe your parents' job then you would have that covered. It is expensive but totally worth it if you end up having surgery.
Well, I hope you find what works for you!



joyj0yjoy wrote:My name is Joy. The pain started roughly 3 years ago (no trigger to speak of, the only thing I can think might have helped start it is leaving in a tampon too long), and I kinda just tried to ignore it because my family doesn't have health insurance and my mom thinks doctors are the devil (yeah, she's crazy). I just stopped using tampons and tried to forget about it/hope it would go away on it's own. I wasn't what you'd call sexually active, so it was kinda easy to push it to the back of my mind. Today, I'm still a virgin (saving it for my husband) but I have since indulged in certain pleasures, or at least, tried to. My VVS made it impossible to allow any insertion due to the pain, (I would just cut my boyfriend off, tell him I wasn't comfortable with it, etc). I recently (by recent I mean like April of this year) became fed up, (what's a girl gotta do to insert a goddamn tampon without pain?!) and saved up for a gyno appointment. Ended up seeing a nurse practitioner because the gyno injured herself or something. This bitch looked up in me, poked and prodded, watched me writhe in pain, and then looked me in the face and said, "There's nothing wrong with you, your vagina just isn't ready for insertion. I'm sure this will go away once you start having intercourse."
I went back out to my car and broke down sobbing (I'm not a cryer). I felt so helpless. "What's wrong with me??" "Do I have to live with this?" "Is it so much to ask to enjoy foreplay as a virgin?!" It was awful. And I obviously told no one about it because it'd be embarrassing as hell - "Yeah, my vagina hurts upon insertion and I waited years to get it checked, and guess what, it's actually all in my head" NOPE. So I booked an appointment elsewhere ("Fuck that bitch, she's wrong, I need help" I thought). $277 later, (will probably be billed for more due to the diagnosis) I see an (ACTUAL!!) gyno this time, but she starts saying the same shit as the other lady, like, "Try spreading your legs really wide when inserting a tampon" and "maybe use lube" and "try stretching it out with a vibrator". Thankfully, she felt around enough to actually feel the inflammation and was like, "If you wait for Dr. Such-n-Such to get out of his C-section, he can probably give you better answers" so I was like, "Of course I'll fucking wait if it'll get me closer to some answers" so I wait and he comes and checks me out for like 60 seconds and says, "Describe the pain" and I say "Burning" and he said "Yup, I know this." and he sits me up and explains I have VVS, how they don't know what causes it, and there isn't a cure, but some treatments can help, though are a little spotty, and worst case scenario is having surgery. I was so RELIEVED to have an answer, a name, the makings of a solution. Not knowing, and feeling like you're crazy, is the worst part.
He prescribed a low oxalate diet, synalar (ointment) on area twice a day for 2 weeks, once a day for 2 more weeks, every other day on the 5th week and twice during the 6th week, plus citracal 2-3 pills daily for the same amount of weeks, then a follow-up appointment 8 weeks from now. I'm currently waiting on my pharmacy to get my drugs in, they say they'll be ready tomorrow. So that's when I'll start them. I am hopeful. The biggest worry is money. (It's over $150 for these drugs!!) I work 2 part-time jobs, one $10 an hour (about 20 hours a week) and the other $8.25 an hour (about 20 hours also). My health is important to me, GETTING BETTER is important to me! It's worth whatever it takes, but I don't want to go into debt over this, and health insurance seems like such a crazy expense for a plan that may not cover my pre-existing issue.
Thank you for reading, it feels good to lay it all out like that. I will probably tell my bestfriend and roomates, now that I know I'm not crazy. If you have any information/advice about the drugs I'll be starting or the diet or about the insurance situation, please share!
So glad I found this forum I love you

Cami90

Posts : 10
Join date : 2012-10-30

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