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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

» MAY HAVE FOUND A CURE- PLEASE READ
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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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

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


Has anyone considered or had surgery (e.g. vestibulectomy)?

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Has anyone considered or had surgery (e.g. vestibulectomy)?

Post  takoyaki on Tue Sep 27, 2011 11:59 pm

Hello all. I am thankful that this forum exists. I've been a lurker for a few months, but I feel far less alone knowing I'm not the only one going through all of these symptoms!

My Vulvodynia symptoms started almost six years ago when I was 25, out of no where. For the first two years, gynos and other doctors made it seem like it's all in my head, that I was frigid (one gyno told me I should go out and get drunk before the next time I had sex!), that I should go see a sex therapist (who ended up amplifying the message that it was in my head, etc). I was finally diagnosed by a colleague of Andrew Goldstein--I cried when she told me what I was feeling was real and that she knew what it was. My hormones were out of whack because of hormonal birth control pills, which I stopped immediately (first signs of relief immediately followed), and applied a compounded estrogen/testosterone cream she prescribed. I started to feel better after about six months.

But two years ago, it all started getting worse again. I couldn't afford Goldstein's office because they don't accept insurance, so I started seeing Kamal Hamod at Johns Hopkins this past January. In these last 9 months, he's had me on gabapentin 6% cream, low-oxalate diet/calcium citrate, elavil, and sitz baths. I've also had a pudendal nerve block. Relief at first but then not. I've also been doing physical therapy at Georgetown since July--I can feel it benefiting my internal tightness (which was compounded by muscle pain issues in my hips, legs, and lower back), and want to continue the external work. The internal work (massage and dialators), has been difficult, primarily because the lube burns me externally. Sure enough, my vestibular area has been tearing again.

I've shared all of this because Hamod is now recommending surgery--a vestibulectomy. I go back next month to discuss. I've read the varying success rates (which seem to be affected significantly by age of patient?), but I'd like to communicate with women who have considered this option, how it went if they chose to have it, or why they chose to decline it.

I see no hope for improving my external problems of tearing and burning. The burning has in the past month and a half been traveling "up" my vulvar area to my clitoris, which scares me. I feel like I'm willing to try anything at this point.

Thanks for reading.

takoyaki

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Re: Has anyone considered or had surgery (e.g. vestibulectomy)?

Post  Sarah001 on Fri Sep 30, 2011 5:22 pm

I think most of the ladies on here have generalised V which rules out surgery as an option. Also lots of us are from the UK and it's not easy to get surgery of that kind here. Try looking on www.vulvarvestibulitisrelief.com and go through the case studies, VVS is the ony type of V suitable for surgery so there might be some women on there who could help you.
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Sarah001

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