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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

» 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

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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 …

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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 …

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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



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


Three years down the line .....

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Three years down the line .....

Post  Jacky51 on Thu Nov 14, 2013 11:46 pm

Hello everyone

Three years ago I developed chronic burning pain which came on literally overnight. On a scale of 1 - 10 it was nearly always at a 9. After scouring the web, finding this website and seeing a gyni I knew I had vulvodynia. I was beside myself, was in the depths of depression and unable to work. My gyni prescribed lidocaine and amitryptoline, both of which didn't work. I also tried acupuncture but that wasn't much help either.

I finally decided to see a private pain consultant. O my he was my saviour - finally I had found someone who could sympathise and understand my agony. He immediately put me on 150mg of lyrica, kept me on the amitryptoline and gave me a supply of tramadol for emergencies (I only ever needed to take them once). Within 48 hours the pain had all but gone. In my second week he increased me to 300mg and I had no pain at all. In total I was on 300mg lyrica and 50mg ami.

Unfortunately I did have some side effects such as a dry mouth and weight gain but this was a small price to pay.

I was petrified that if I came off the meds the pain would come back. however, with the support of my gp (who incidentally admitted she didn't know much about the condition and was as pleased as I was that I had found something that worked), I have weaned myself off the lyrica over a long period of time. I am still on 10mg of ami and that is only because it helps me sleep!

Thankfully the burning has not returned. However, now that I know that something has worked for me it is no longer a fear, if it does come back I'll be straight back on the pills - let's face it most people have to take some form of medication for their ailments.

I really would encourage anyone to give it a go, it might work for you too. My heart goes out to you all, I honestly don't know how I got through those initial months I really had got to the point where I had virtually given up. I haven't been on this site in a long while and was really surprised to see how much it had grown in numbers, there are so many of you all suffering x

Jacky51

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Re: Three years down the line .....

Post  Leslieg on Fri Nov 15, 2013 1:59 am

Jacky, thanks for posting! It is so great to hear success stories . I'm glad you are well! God Bless xo

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Re: Three years down the line .....

Post  Delilah1 on Sun Nov 17, 2013 3:16 am

Thank you for returning to the forum and sharing your success story!! So glad you are feeling better!! Can I ask if sex was painful for you? Has your sex life returned to normal?

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Re: Three years down the line .....

Post  Jacky51 on Sun Nov 17, 2013 11:12 am

Thanks for your well wishes. If I am honest I was scared of having sex in case the burning pain came back. My poor husband put up with a lot, but things are back to normal and not at all painful now.

Jacky51

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Re: Three years down the line .....

Post  tinkerbelle2 on Sun Nov 17, 2013 9:51 pm

Hi jacky, I didn't even realise the site has been running that long I only joined a couple months ago. If only I had found it sooner. An amazing way to share and support each other. So glad to read your story! I was going to mention lyrica to my gyno tomorrow as quite a few women have mentioned it. What were your symptoms? So happy for you!
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Three years down the line .....

Post  Jacky51 on Tue Dec 10, 2013 11:28 pm

Hi tinker belle did you speak to yr doctor about Lyrica.  In terms of my symptoms I had the most excruciating burning pain, at times it felt like someone was grabbing hold of my vagina and at others it was really painful inside as if I had inserted a tampon badly.  On a scale of one to ten I was always around a 9.  It really is the most awful condition for anyone to have, especially as most people don't understand and it's embarrassing to talk about.

Jackyx

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Re: Three years down the line .....

Post  mary jane on Wed Dec 11, 2013 11:41 am

Hi Jacky, loved hearing your story as it gives me hope. I also take 50 mg ami and I shall beg for some Lyrica, if only my stupid GP would put her brain to contribution. I hate GPs so much, in my country GPs are worth s... we only see the specialists.
anyway, so amazing you are cured !! yey loved reading this !!

How long were you on the lyrica??

thanks
xxx
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Re: Three years down the line .....

Post  Jacky51 on Wed Jan 01, 2014 11:51 pm

Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way. I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

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Thanks

Post  907hopeful on Wed Jan 08, 2014 6:08 am

I can't tell you how great it is to hear success stories. I am just in the beginning stages if this roller coaster and still working to get properly diagnosed. I started with skin irritation which has somewhat disappated and I have moved on to stinging, burning and some days (or weeks) pain. My pain levels are not at a 9, but this problem has really taken an emotional toll on me. Your story gives me hope. I will make sure to add Lyrica to my list if meds to ask about next week!

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Lyrica help please

Post  Jo44 on Wed Nov 18, 2015 9:28 am

Jacky51 wrote:Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way.  I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

Hi Jacky

I have messages you privately a couple of times but no joy! I was wondering how much you reduced Lyrica each time & did you struggle with any withdrawals please?

I'd appreciate a reply?

Thanks


Jo x

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pain and burning?

Post  amyhp on Wed Nov 18, 2015 8:06 pm

Jacky,
Did you have a sore pain feeling along with the burning? I have tried Lyrica in the past and it didn't work. Do you think it was the combination of the amitriptyline and lyrica that helped?

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Re: Three years down the line .....

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