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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 …

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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.

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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!!

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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 …

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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.

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20 years old with vulvodynia... my story

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20 years old with vulvodynia... my story

Post  Young aussie girl on Thu Feb 02, 2012 12:38 pm

Hi everyone,

I can't believe I found a place where I can talk about my condition and actually have people reply who understand and know exactly how I'm feeling! Even though I have incredibly supportive friends, mum and boyfriend I don't know how to talk about it with anyone because I feel like I'm weird... Maybe that sounds strange but no one knows ANYTHING about this condition and I can't bring myself to talk to anyone about it.

So basically I have had extreme pain since the first time I had sex... three years ago (when i was 17 and am 20 now). About two months ago my fifth gyno finally diagnosed my condition as vulvodynia. It took 3 whole years to convince my gp that something was seriously wrong... only to be told time and time again "it's in your head" or "maybe you have chlamydia, let's do ANOTHER test" or "you might have cancer, here goes your fourth pap smear in six months". Finally I forced her into referring me to a specialist and was passed around until someone actually knew their stuff. Since then I've been seeing a physio who is lovely and supportive...

The problems I have had from the beginning are basically surrounding my inability to deal with this. I feel like I have no one to talk to, who understands and can help me. My boyfriend (same partner is first time) tries to understand.. He understands I'm in pain but what he doesn't understand is how much and why. He doesn't understand that, after three years (and might I add my entire sexual experience) I have only experienced gut wrenching pain and have never had anything even remotely close to being an orgasm. And in that time I have lost my sex drive... I mean it's still there but the thought of ACTUALLY having sex makes me feel physically ill. I know it can be good but my only memory is of something terrible. Lately I see how hurt he is by my rejection, but with my new attempts at physio I can't emotionally or physically handle anything more. I see him drifting away from me and I don't know what to do... I can't fake it anymore.

I feel so lost and depressed... someone please tell me everything will be ok eventually?!! And please tell me I'm not the only one out there.. because I feel so alone.

Sometimes I just wonder.. why did this happen to me?

Young aussie girl

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Re: 20 years old with vulvodynia... my story

Post  Kam10 on Thu Feb 02, 2012 5:00 pm

You are definitely not alone. I often wonder why this happened to me too. My entire life I did all the right things with my hygeine down there and always used protection, but it still didn't matter. It frustrates me to no end.

I'm so sorry about all the problems you are having. I don't like to talk about this with anyone either, except my husband. I feel embarrassed, but I know I shouldn't.

Hopefully the pysio and specialist you're seeing now can offer some relief. I know it seems hopeless, but hang in there.
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not alone!

Post  AroraNightfire on Thu Feb 02, 2012 6:43 pm

Dear Aussie Girl

I am so very sorry you are suffering with this disorder. I am 27yrs old and I live in Massachussetts USA. I have been suffering since I was 18 with a variety of different symptoms. I did not get diagnosed with vulvodynia until sept 2010. Drs are such morons sometimes! I am currently seeing a anasthesiologist who is trying different meds to get my pain under control. Its hard for me to have faith in anyone entirely since I have been disappointed by every doctor I have seen. My mother and friends keep telling me to have faith that someone will finally get to the bottom of why I have pain. Im trying to hope but im afraid to hope. If you ever need anyone to talk to please don't hesitate to private message me. You should read my other posts. Its very important that you record the dates and everything you have tried with each doctor. That's what I've been doing.
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orgasm

Post  AroraNightfire on Thu Feb 02, 2012 6:51 pm

You say you have never had an orgasm. Before you had sex when you were 17 had you mastrubated? I am only able to reach an orgasm through clit stimulation and I know its true for most girls. Friction in my vagina does nothing for me, it only causes pain. Sexually what I enjoy is having my breasts played with being kissed and stimulating my clit slowly pausing in between. If you don't enjoy sex with a man then maybe sometime when you feel in the mood you should do things you enjoy by yourself. Once you feel comfortable with being sexual again maybe tell him what you enjoy. Have him watch you perhaps? Its just an idea. I don't mean to sound pervy im just trying to help. Im really sorry you suffer. I suffer everyday and im also not able to handle penetration without the consequence of more pain after. I thank god I have breasts and a clit to enjoy.
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Re: 20 years old with vulvodynia... my story

Post  Young aussie girl on Thu Feb 02, 2012 10:42 pm

No I hadn't.... sex with my boyfriend was pretty much my first sexual experience.... so you can see why I'm so negative! I have pain upon penetration, during penetration, after penetration... you name it! I can see that the physio work is helping but I know it's not going to be some quick fix where I'm going to be suddenly perfect. I'll have to battle with this for the rest of my life and I think this is what is getting me down at the moment. I'm just so tired. And I've always been someone who needs to talk about these things with my friends but I don't know how which makes it worse..

Young aussie girl

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Re: 20 years old with vulvodynia... my story

Post  mars215 on Fri Feb 03, 2012 5:58 pm

Hi Aussie Girl,

I'm sorry to hear about your troubles... I'm 24 and was diagnosed with Provoked VV last year... I just wanted to let you know that I can definitely relate with not being able to tell my friends... I eventually told some of them after I was diagnosed... and they were actually very supportive about it... one had dealt with pelvic pain because of an STD (something she also hid from most people and didn't tell me til i told her about my VV)... and another dealt with a ruptured ovarian cyst... so they knew what it was like to be poked and prodded at down there... not to mention dealing with pain... just a thought... it is different sharing with a girlfriend... i hope you are able to find that support....and you can always vent on here Smile

Take care,
Mars

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Re: 20 years old with vulvodynia... my story

Post  noni on Wed Feb 15, 2012 11:54 pm

Hey young aussie!!

Your feelings of depression, isolation, and utter frustration are totally normal!

Im of the mindset that: Unless I am speaking with someone who has V or VVS, no one else will EVER be able to understand the physical pain that we are in on a daily basis,..PLUS the mental and emotional toll this disorder takes!

Count your lucky stars you have a supportive bf, family etc etc....but nonetheless, its still hard to deal with, I understand.

Anyways, we're here for ya!!

*hugs*

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Re: 20 years old with vulvodynia... my story

Post  Aussie on Fri Feb 17, 2012 12:53 am

I am 23 in Qld where are you?

I found a vibrator helpful in decreasing pelvic floor tension. As well as physio.

Remeber, don't give up! keep searching and you will find something that works.


Best advice: don't rely on doctors to help you - I have paid out of pocket to see people that know what they are talking about. Doctors (the majority) have too many patients to worry about to concentrate on something they don't know how to fix!! Research as much as you can and take your research to your doctors.

Vaginal Valium decreases muscle tension too. Not here in Aus yet. You can get a regular valium and put it up there at night. About 10mg should do the trick.

Any questions just ask.

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Re: 20 years old with vulvodynia... my story

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