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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

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

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

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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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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Sat Feb 10, 2018 12:18 am by rockylife


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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

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Help please

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Help please

Post  phronesis on Sun Nov 05, 2017 6:12 am

I'm truly going insane.
I started living this hell the month of March this year. Everything was more or less ok-ish (I was suffering from a huge depression at that time, but I was feeling a lot better). I had sex and from then on everything went straight downhill.
I started feeling weird, like if my vagina was burning. It was something truly horrible, but I guess if you're here reading this you already know. I went to the hospital and the doctor that saw me there gave me this kinda pills that you gotta put down there for seven days; you know, to set the pH alright and restore the "normal state" that vaginas are supposed to have, idk how to say all this stuff English isn't my main language but this is how desperate I am.
Those thingies didn't do too much, I felt sorta relieved because I think they got some kind of painkiller in them but that was it.
I run one of these tests where they take like a sample from your vagina (is it called vaginal culture???) to see if I had some sort of bacteria or fungi. Nothing alike, all results were negative.
I went back to the hospital, the same doctor saw me again. This time she thought it might be herpes, so she gave me new pills (this time like, the ones you take orally or whatever it is called I'm so sorry). I took the pills and once again the symptoms sort of faded.
At the same time I was seeing my gynecologist, I explained her what I felt but she sorta dismissed my words telling that if I was already taking pills (whether it was the ones for the pH or the ones for the herpes) there was nothing she could do.
Several months passed after that, I didn't enjoy them fully because of these annoying sensations I felt down there, however they usually weren't /that/ bad so I managed. Peeing was no fun at all, every night I felt uncomfortable; idk if this happens to you all but I've read that it's quite common that you wake up feeling alright and it gets worse through the day? But I could tolerate it, somehow.
The thing is, the past few weeks (like, the past 5/6 weeks? idk) it's been true hell. It's become unbearable. It's like something is burning down there and I'm truly going insane. I went back to the hospital, a new doctor saw me there and gave me some medication to kill bacteria and another one to kill fungi. Nothing happened, as you might have noticed. I went to the gynecologist again and after explaining my symptoms she concluded that it's all in my head. I'm running lots of tests right now -blood, vaginal culture, urinalysis- but I already know they all will probably be negative 'cause they already did back then! This lady said that if all of them (and the pap that i'll get done later) are negative, then it's all in my head and i'll just have to talk about it with my therapist until it heals by itself somehow.
Incapable of accepting this, I searched for my symptoms on the internet until I found this. "Vulvodynia". At first I was happy; how could I not be? What I had, had an actual name! It wasn't just me! But the more I read about this disease, the more desperate I get. I guess you understand why: nobody really knows why it happens, there isn't a 100% effective method to get rid of it, even if you do it might come back again. Most doctors ignore that this disease even exists, and idk on your country but I'm from Argentina and here doctors usually get really upset when you tell them about something you've read on the internet because "they've studied and you haven't" so to them you basically dont know shit. I will tell my gynecologist about this when I see her again, but I'm 99% sure that she won't give a shit nor offer my no solutions of any kind. I'm already using jelly lidocaine 2% and most of the time it doesn't do nothing, only if I lay on my bed covered and watch something to distract myself (the only method I've discovered that calms my symptoms since this whole hell started).

I'm truly, truly going crazy. It's so frustrating because I was just starting to enjoy life (you know, after dealing with depression and after my psychiatrist decided I could stop taking antidepressants), and now I want to die all over again. I'm crying every night because of this, I just can't deal with it anymore. I'm having exams in two weeks and I don't know what to do anymore because when the pain starts I can't concentrate nor even sit down (and please don't tell me this has something to do with stress because I already had exams like a month and a half ago and everything was more or less fine, I wasn't suffering like I am now, it's not that). I don't want to suffer from this forever. I don't want to deal with this anymore. I want it to be over as soon as possible, I don't care what it takes. I can't even go out nor see my friends because I'm always feeling uncomfortable. I just need this to stop so I can actually live again. I've just had mi 21st birthday, I've got so much to live and this hell of a disease is restraining me from doing it. Please someone help me. I'm begging here.


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Re: Help please

Post  fairlight10 on Mon Nov 06, 2017 5:44 pm

Hi phronesis. Sorry to hear you also have this horrible condition. It is not in your head. It is real pain in your vulvar. Possibly neuropathic. I have been diagnosed with vulvar vestibulitis more than 5 years ago. Went to different doctors and told I had thrush, then atrophic vaginitis. The medications for these conditions made the pain worse. Found a gynaecologist who told me I had vulvodynia. Which just translates to pain in the vulvar. He prescribed a low dose of the antidepressant Nortriptyline 20mgs. This has worked for me and given me my life back.I was off work for 3months until I felt comfortable enough to function in the workplace. I also had acupuncture. Do not understate your feelings and emotions they definatly have an impact on this condition. Go back to your doctor and tell him about this condition and if need be tell him/her about this forum. Understate should read underestimate. You have found this forum, read as many as you can.I did not find it at the beginning and I wish I had. Good luck and know you are not alone.


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