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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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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 …

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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

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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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My story - scared 21 year old

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My story - scared 21 year old

Post  rosina on Fri Dec 07, 2012 3:44 pm


I am 21 and have been diagnosed with vulvodynia/Vestibulodynia. Quite frankly it has ruined my life! I only have this pain when it is provoked, i.e through wearing tampons or through having sex. Needless to say the relationship with my long term boyfriend has greatly suffered!!

I've been suffering from this for over a year and a half and I can't tell you the frustration I've felt seeing numerous doctors/gyneacologists who tell me it is in my head when it very clearly isn't as I am sure a lot of you will relate to.

I got so fed up with everything (test after test and numerous thrush cures) that although we couldn't afford it in the slightest I went to see a private gynecologist - one of the best in London and he gave me Botox injections. (£500+) but at this stage I was willing to pay anything and do anything to get rid of this problem. I had 7 injections, 5 on the outside and 2 on the inside. It did cure the pain on the outside but the inside pain remains. I did not go for another treatment as quite honestly I personally found the treatment quite horrific.

I decided to go to a different gynecologist and she told me to use the dreaded dilators for 6 months... which I did religiously but with no difference in the slightest.

I now am seeing a new doctor who has prescribed me Nortriptyline but apparently if that doesnt work there are other ones to try. Has anyone tried using these treatments??

I'm not giving up hope! although some days it is very hard!!

I have a fantastic relationship with an amazing man who understands but I feel there is only so much time he will put up with it for - regardless of what he says. Each day is taken up constantly thinking about it and wondering if each new treatment will work and when it doesn't I worry about how to break the news to my other half.

This thing is taking over my life!! Sad I'm so unbelievably scared that it won't ever go away. has anyone else had a similar experience??



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Re: My story - scared 21 year old

Post  cba321 on Sat Dec 08, 2012 12:44 am

Hi Rosina

Yes I have been told that it was all in my head....by idiots who call themselves doctors, from reading this forum most if not all of us have been told that at some point. However I now have seen doctors and health professionals who don't believe it is all in my head.

Did you start doing dialators as soon as you got the botox injections?? botox alone won't help the problem at all, it is just a temporary paralyzing of the muscles for about 6 months giving you time to stretch out the muscles before the botox wears off. I had the botox injections but have had very strict Physio since 5 days post the injections. The physio I have seen has done randomized control trials on the botox injections with Physio post the injections so is very experienced. I am only 3 months in, so I have another 3 months of botox, so it remains to be seen if the physio will work to stretch the muscles out and stop the spasms.

Maybe potentially starting with a physio who specialises in pelvic floor conditions and pain may help. I have also just started seeing a psychologist (one who specialises in sex and pain) and I am finding that very helpful. I am not in a relationship and have been petrified for years to start one up again but the psychologist is helping me to not place so much emphasis on the vagina - there is lots of other great things that you can do all with the same outcome as vaginal sex! Even though I already knew that fact, I don't think I really absorbed the implications until now...and how by eliminating the pressure for vaginal sex, the pressure I feel, the insecurity I feel, the depression diminishes also = a healthy potential for a relationship - I know it isn't the greatest plan but is a plan nonetheless and is one way to not let your vagina take over your life. Additionally I am doing quite a lot of therapy to decrease the actual pain.

It is a very scary experience, but an experience I think that gives you a very interesting outlook on relationships and human behaviour. It is a very maturing experience not just a scary one


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Re: My story - scared 21 year old

Post  lauramw on Sat Dec 08, 2012 1:54 pm


I've also had shitty doctors/people who have made me feel like a total freak and haven't respected that what i am going through is serious. i have never had botox injections, that sounds somewhat traumatising, i have tried the most natural approach possible being physio therapy, pelvic floor work including dilators (which honestly sucks so bad sometimes but i think does help - try making it a sexual process, not a clinical one) and seeing a psychologist who helps me get perspective and not making my vulvodynia the centre of my entire universe.

I've found that there are good people out there and men are more understanding than you might expect. i think if they aren't understanding, why would you want them around anyway? love goes far beyond sexual acts. i think the most important factor of this whole awful illness is your emotional reaction to it. my vulvodynia is so so responsive to my stress and anxiety, you have to be good to yourself and then your body will follow.
it terms of other medical treatments - i was on endep 50mg for 3 years but loathed the drowsy side effects so now i am not on any medication which is scary but better than putting chemicals into your body. i have heard they are clinically trialling endep as a topical ointment, not as a pill, so your body is not effected and you can use a much higher dose just on the localised area. this is very exciting, keep your eyes peeled.
i think there is hope - in my 3 1/2 years of suffering, about half that time i have been progressively experiencing low pain/pain free sex. i am in a bad period now but i have to be strong.
good luck xx


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Re: My story - scared 21 year old

Post  Karen818 on Sun Dec 09, 2012 11:07 pm

I am in the same shoes as you, intimacy has become so depressing for me,every time my boyfriend wants to get a little intimate with me I start to get very stressed out and all I can think is how bad is the pain gonna be this time, there are times where I just let him do it because I feel bad but I cry silently from the pain.... It's awful and I have no one to talk to because none of my friends even know what this is, and I can't afford any doctors as I am a poor student, and don't have health insurance, I would talk to my mother but she doesn't know Im sexually active and I don't have that closeness with her to tell her :/ I'm miserable, so you are not alone I always feel that my boyfriend will eventually get sick of it and leave me as well :,( let's just hope this illness will go away or that the cure will come out in our lifetime!


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Re: My story - scared 21 year old

Post  mary jane on Sat Oct 05, 2013 6:46 pm

Can you update us on your progress?
I'm in London as well, just got a referral to a specialist at the vulval disease clinic.
all the best
mary jane

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Re: My story - scared 21 year old

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