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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 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

Wed Feb 14, 2018 3:33 am by Athena


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.

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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

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Post  Rose86 on Tue Feb 18, 2014 6:53 pm

Hi all,

Quick question - have any of you had any success using pregabalin or gabapentin to treat vestibulodynia? My gynae wants me to go on pregabalin but I only have localised provoked pain and can't find any evidence to suggest it works for this. I'm not prepared to go on a drug with side effects if it's never worked for anyone!



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Re: Pregabalin/gabapentin

Post  Alana3 on Tue Feb 18, 2014 7:38 pm

I used it for provoked but it didn't work for me but you don't know until you try. You can always get off it there shouldn't be lasting side effects so once you wean off you should be OK. But if it works that would be cool.


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Re: Pregabalin/gabapentin

Post  alessandria on Tue Feb 18, 2014 8:55 pm

The only clinical trial examining pregabalin for vulvodynia was discontinued due to low enrollment, so there are no real studies on whether it is effective or not (there are anecdotal reports of people getting better on it, but mostly in the case of generalized and unprovoked). As far as gabapentin goes, there is a multicenter trial underway right now in the US to see whether it is effective specifically for provoked vulvodynia. There is evidence to suggest it works well in people with generalized and unprovoked vulvodynia, at the very least. However, unprovoked and provoked are thought to be caused by different mechanisms, so what works to treat one might not help the other. There just isn't a ton of data, which means it might work, it might not. Both of those drugs have been under a lot of fire lately for not actually being helpful in a ton of different pain disorders, despite prevalent off-label use. Doctors have been prescribing them for plenty of things under the rationale that you never know until you try, but it has ended up hurting people. So...a lot will come down to whether you feel like its potential risks are worth it, and that's a personal call.

A question, how has physio been going? Did you end up getting botox? I think as long as you have noticeable pelvic floor dysfunction, I'd continue working on that -- it DEFINITELY can be a huge cause of provoked pain in particular, and it's hands down the best route to go with if side effects are a big concern of yours. If you are not super concerned about side effects, then the drugs could totally help out and should be up for consideration. Good luck!!


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Re: Pregabalin/gabapentin

Post  Rose86 on Tue Feb 18, 2014 9:26 pm

Hi! Yeah the gabapentin study came up in one of my searches, but god knows when we'll see the results of that one! As for the Botox, I didn't go down that route in the end, my new gynae doesn't seem keen on it. But I'm certainly keeping my mind open to it. As for the physio, I've been using a biofeedback machine and dilators since October and haven't noticed any change in my vestibule pain, even though my resting tone in my pf muscles has gone down. I'm still unable to relax the pf muscles when I'm thinking about something else though so maybe that's the problem. I'm reluctant about gabapentin and pregabalin because of the side effects, however I would be prepared to try topical gaba/pregabalin if I could get it prescribed in the UK. I'll be asking my gynae at the next appointment if it's an option.


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Re: Pregabalin/gabapentin

Post  JemimaSurrender on Mon Mar 10, 2014 7:12 pm

I used Pregabalin for about eighteen months I think, and for a decent portion of that I did seem to be considerably better and sex was almost bearable, but it did return eventually. I am now on Gabapentin, and have been for about six months and have had no success so far!

I did see a consultant today and he said they rarely work for the kind that I have as it's for nerve pain rather than provoked. Another success for the NHS then, thanks guys!


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Re: Pregabalin/gabapentin

Post  Rose86 on Thu Mar 13, 2014 10:41 pm

Hi Jemima,

You say the pregabalin worked for a bit - do you have localised provoked pain of the vestibule or something else? Also how did you find the side effects and also coming off it at the end? x


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Re: Pregabalin/gabapentin

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