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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» 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.

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

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 …

Comments: 11

Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

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Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  min77 on Fri Oct 15, 2010 7:54 pm

Hi. I’ve been suffering with stabbing vaginal pains for about three years now. I’ve got good days and bad days, but I’m never pain-free. Most days I struggle to go about normal life, and there are at least two days a week where I barely manage to walk. After a long odyssey via a whole host of different specialists, I was diagnosed with essential vulvodynia earlier this year.

I’ve now tried Amitryptiline, Gabapentin, Carbamazepine and Pregabalin, and none of those have helped. I’ve read that some women benefitted from electro acupuncture, and I’d like to give that a go. Has anyone got any experience with electro acupuncture? I live in North Warwickshire, and there don’t seem to be many electro acupuncturists near me. I’d prefer to see someone who has an understanding of the condition and is interested and caring. I think it is particularly important for that kind of thing to work if I can build a rapport with the person.

I’ve had more than my share of doctors who didn’t really seem to be genuinely interested in helping me. I feel a bit like I’ve been put into the category ‘vulvodynia’ as there seemed to be no evidence of another problem (CT, MRI and bone scan didn’t show anything), but the specialists have never really asked many questions or wanted to listen to what I was trying to describe. Since I was diagnosed, I have tried to gather as much information as I could, and the more I read, the more confused I get. I keep reading that most women find that they are most comfortable when they stand or walk and that they find sitting quite painful. I’m the complete opposite. I can’t walk long distances, and most days I’m lucky if I make it round the supermarket without wanting to curl up on the floor. But sitting is no problem for me. I’ve also read that most women who suffer from vulvodynia find that their vulva is highly sensitive and that they can’t enjoy a normal sex life. I don’t find that. There seem to be so many different kinds of vulvodynia, and none of them seem to really describe my case. I’d like to know if I definitely have vulvodynia and if so, what kind. I imagine that might narrow down the list of things I need to try to find something that helps.

I’d really like to hear from other women who are going through the same thing. Is there anyone with a similar case to mine? Has anyone got experience/advise on electro acupuncture?

Thanks and take care.


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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  Mouse on Sat Oct 16, 2010 2:54 am

Hey there,

I also struggled with "fitting in" to a support group. I have generalised unprovoked vulvodynia, I can also have sex but have constant pain. I was almost embarrassed to mention that initially.

I can now sit "almost" comfortably most of the time sometimes it's more on my tailbone - which is particularly bad for my back.

I feel like I live a double life and that's probably the same for all of us. I think we are all different and that there are so many variations, comparisons are probably a waste of energy. Vulvodynia is really a broad term for vulval pain, initially I had PGAD which also fits under that general term. People in our every days lives do not get it and a chronic pain condition can steal your soul if you let it. Finding people who understand can be a life saver.

Have you found a specialist in vulval pain or a pain clinic? I now see a sub specialist in vulval pain, she is amazing. She's from the UK - thanks for that I'm hoping she wasn't your only good one Very Happy

Sorry I don't know anything about electro acupuncture. I have done the Ami and am now on Gabepentin, I'm hoping I don't need to keep progressing in the drug stakes.

My therapist said I should be honest with my friends about how bad it is getting through a day. I've tried that. It's not that they don't care, they really don't get it.

I've never heard of essential vulvodynia actually I wish I'd never heard of vulvodynia at all.

I hope you find some answers on here.

Take care, kia kaha.


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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  jules on Sun Oct 17, 2010 3:26 pm


I would agree w/ Mouse. We all have different kinds of Vulvodynia. Unfortunately, the doctors don't know the cause or the cure so we are lumped into a group of women w/ Vulvar pain. Like Mouse, i am the medication regiment. However, I also see a pelvic pain specialist who is a Physical Therapist. She has determined the resting rate of the muscles in my pelvic floor and she is working w/ me on strengthening muscles in my pelvic area. I also will have a tens unit, which has electrodes that attach to areas in your body (lower back in this case)to interrupt the messages the brain gives to the nerves. there are other women on this site who have them. they can comment..but, that may help you. i have not done acupuncture. I have heard it can help some women. maybe others here have. Good luck! Stay positive...we'll figure it out. Like Mouse said, find a Pelvic Pain Specialist who knows what they are talking about.


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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

Post  min77 on Wed Oct 20, 2010 11:29 am

Thank you so much for your comments, Mouse and Joules. It's helps to know that other people are going through the same experience, although it makes me angry to think that there are so many people suffering in silence every day.

I think my next priority will have to be to find a vulval pain specialist who is experienced, caring and willing to work with me. Wish me luck.


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Re: Do I really have vulvodynia? and Has anyone got any experience/advise on electro acupuncture?

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