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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 …

Comments: 1


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


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

New girl from the states

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New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 5:21 am

Hi everybody. I have been suffering from vulvodynia for as long as I can remember. I am only 22 years old, but I have never lived without intense pain upon penetration (even when I was a young teenager and trying to insert tampons). I am kind of at the end of my rope at this point and I have found it very difficult to get over my spells of depression lately. I am incredibly lonely and I feel absolutely hopeless. I decided to finally join one of these support groups in hopes that I can work through my emotional and physical pain alongside others who understand. This condition is absolutely awful, but I am glad to have found a place with empathetic women who are working hard toward finding a cure! I look forward to sharing stories and treatments with you all.


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Age : 29
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Re: New girl from the states

Post  naomi on Mon Mar 14, 2011 9:15 am

Hi hun!

Welcome to the forum...you're among friends here so no thinking you are on your own anymore! I felt like that about 2.5/3 years ago and struggled away until I came across this forum cruising the health sites etc for any help I could find. Sebby (admin) is a god send for setting this website up as there seems to be little accessible help out there.

We are all working on this condition together on here.....crap days, crappy days and better days! And believe me we can all relate to the feelings of despair, hopelessness and depression...know that all too well Sad

There are loads of treatments that are possibilties and these are the girls to get to know! Since I joined in July it has been my main place of mental relief.

The regulars on here are a bunch of nutters but completely harmless Smile heheeee, I think they are all lovely and we do have fun on facebook (message Sebby the Admin or me on here and I'll get you on the secret group on facebook where were are all real girls woooooooh Smile there's about 20 of us on there now, all spread across the globe, so there is always someone around to chat to if you are struggling...or talk about general rubbish Smile It is a secret group so no telling the world about ur La-la problems Smile

I hope ur day is good. And dont forget you're not alone in this anymore!!

Naomi xxxxx

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Re: New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 7:12 pm

Thanks so much Naomi! I actually JUST deactivated my Facebook after having it for 5 years because I was finding that it was only bringing me down (i.e. always reading about everybody's perfect lives and love lives). If I decide to reactivate it I'll definitely join the group!


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Re: New girl from the states

Post  Sebby (Admin) on Mon Mar 14, 2011 8:02 pm

Welcome to the forum Smile

Yes we can all relate to how you are feeling. This condition is so isolating as you don't feel able to talk to many about it like you would if your arm hurt!

I too have always had pain witht penetration, during sex, tampon insertion (since I tried at 13) and medical exams. This does not mean that it will be any harder to treat just because you have had it for a long time.

I have dealt with feelings of utter despair and there are days when I just don't feel I have the strength but the women I've met on the forum help to refill my strength bottles..lol I really dont know where I got the term strength bottle!

What treatments have you tried and what treatments are you currently on?

Im going down the route of pelvic floor biofeedback which may take months to take effect but I am plodding on and remaining hopeful

I have also been on 300mg on Pregabalin for about a month and have noticed a reduction in general pain and flare ups last a day or two rather than several days

I am also spraying the vulval area with water after urination and applying vaseline as a barrier against rubbing which Im also finding helpful

If you wish to joing the facebook group you can always set up another fb page even with another name, just to allow access to the group

Take Care


Sebby (Admin)

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Re: New girl from the states

Post  seagirl88 on Tue Mar 15, 2011 6:40 am

Thanks Sebby. It's so nice to know that there are other people who are going through the same thing! Also, creating a Facebook account under a different name is a good idea-- I might do that. As far as treatments go, I've had a hard time admitting to myself that this is a problem that isn't going to go away on its own. Therefore, I probably haven't tried nearly as many treatment options as most of you all have. I have definitely gone down the route of oral antifungals a couple of times (because I was either diagnosed with a yeast infection or BV) and those of course didn't do anything. I then used Estrace cream for a while in combination with a steroidal cream, but those didn't do anything either. I JUST finished a treatment prescribed to me by a naturopathic doctor where I douched with chamomile tea and slippery elm bark and vaginally inserted both natural antifungals and probiotics. It may have helped slightly but not significantly.


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Re: New girl from the states

Post  Mouse on Wed Mar 16, 2011 8:14 am

Hey hun and welcome!

We're all here to help =) We have a lot of fun on the FB page and it's a great place to have a whinge also! So give that some thought.

It's really easy to get down, this thing can be soul destroying. Have you got a therapist? Mine virtually saved my life, I was circling the drain six months ago. Now I meditate, have radically changed my diet, do PT, aim for good sleep hmm and try to destress - that's a work in progress. Most days it works.

In the mean time do you have a pelvic pain specialist or a vulval specialist? Check out Sebbys consult with Howard Glazer there is really good advice on there.

Sadly there are a lot of women your age on here but all of us are desperately seeking a cure. Making a commitment to finding that is the first step so well done! Ideally living the cure rather than the disease - sounds good in theory doesn't it!

I hope you are having a good day. Take care


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Re: New girl from the states

Post  seagirl88 on Wed Mar 16, 2011 7:59 pm

Thanks Vicki! I actually just made an appointment with a therapist for this coming Monday. I've gone to therapists before about dealing with my anxiety and depression, but I've always been too embarrassed to mention my vulvodynia. This time, I'm just going to let it all out! I also booked an 8 hour meditation orientation for the end of May, so hopefully that helps.

Currently I'm still going down the route of diet change (and a possible upcoming detox and candida treatment). My plan is to spend the next 3 or so months doing that. If I don't have any significant improvement I will definitely look into going to a pain or vulva specialist.

Thanks for your support!


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Re: New girl from the states

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