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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 3

Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 0

vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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

Posts : 1
Join date : 2015-07-31

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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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