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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 …

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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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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

New girl from Nottingham

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New girl from Nottingham

Post  chachi on Mon May 09, 2011 1:13 pm

Hello All

I have passed through this forum so many times & never become a member so today I thought I should.

I wondered if anyone else gets intense pain and soreness in their legs? For me, it feels like my skin is red raw & sort of itchy and prickly on my buttocks & vagina but mainly down the back of my thighs which is basically the bits of me that make contact with a chair! I haven't read anyone else mention this particular symptom so I wonder if it's something different to vulvodynia?

I know that I have vulvodynia, I have had it for about 6 years now. I did the usual two year trip around the medical disciplines before I landed back in gynae. I am currently taking amytryptilene (spelt wrong!) which does work but I still have break through pain. I am on 10mg a day or 20mg if It's really painful at night, I really could do with upping the dose but it makes me feel like I'm living in a cotton wool cloud as it is & it gives me the most AWFUL nightmares every night I feel terrible every day on waking just from the bad dreams. I would ideally like to stop taking it but I really dare not stop. I have tried all the other usual stuff too but that just made me a dribbling mess!

Anyway, thought i'd say hi.

Keep on keeping on ladies Surprised


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Re: New girl from Nottingham

Post  Sarah001 on Mon May 09, 2011 7:51 pm

Hi Chachi and welcome! The area of prickliness you're describing sounds more like the sciatic nerve to me, it runs through the buttocks and down the back of the leg and usually causes odd sensations as far as the knee but not lower but of course there are always exceptions to the rule. It doesn't supply the vulva however there are muscles that can press on both the sciatic nerve and the pudendal nerve which does supply the vulva, the piriformis is one trouble maker for both and the pelvic floor another. Tightness of muscles around he sit bones could also do the trick, I think a physio appointment if you haven't had one would be a good idea. They may send you for an MRI too to check the disks are ok in your lumbar area, been there done that *sigh*!

Anyway glad you joined us and welcome again.

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Re: New girl from Nottingham

Post  noni on Tue May 10, 2011 1:26 am

Hey Chachi,

I can relate to your mention of odd sensations on the upper thighs. I get prickly or strange sensations where it feels like drips of water on my upper thigh Bizzzzare.

Anyways, Like you, I have found that Amitriptyline is the ONLY thing that has come close to taking the edge off pain. I am on 50mg but I could also go higher...and then go into la la land forever.

I actually went through my prescitption too fast and the Pharmacist was hesitant to re-fill my Ami. Well, what can I say...pain is pain.

Anyways, take care.

oh and welcome.


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PNE misdiagnosed as Vulvodynia?

Post  chachi on Tue May 10, 2011 10:41 am

Hey noni & sarah,thanks for your replies. This is really odd actually but since reading sarahs reply I have done a little searching and I'm pretty damn sure I have been misdiagnosed! I think i have PNE it's actually like reading a text book on my symptoms. Apparently, it is often misdiagnosed as vulvodynia as there is vulval, clitoral and rectal pain with both. The tell tale sign with me though is the pain in the backs of my thighs, it's unbearable at the moment to sit down or having anything touching my thighs at all. How are we all supposed to carry on working thats what I'm thinking?! If i take the amitriptyline (which i do) I'm out of reality for most of the time and don't feel like i've got my head in the game, if I dont take them I'm in so much pain I need to spend the day laying down. It makes you grumpy being in pain all the time to.

Sometimes, I'll be honest, when I look to the future & imagine this pain for the rest of my life......I wonder if I can handle it. Also, I'm 37 & really want to have a baby ASAP but i'm terrified of the thought of 9 months and no amitriptyline, I'll have to do it I know but it's a horrible thought. Then i get to thinking....how will I be able to work if i'm pregnant and have no pain relief?! Anyway, rant over It's nice to know that you guys are out there and know exactly what I'm talking about.

I'm waiting for an appointment to come through for the specialist anyway so I'm going to take it up with him.....fingers crossed (deffinately not legs as it hurts!)

take care Very Happy


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Re: New girl from Nottingham

Post  noni on Fri May 13, 2011 3:07 am

Im on the path of healing rather than curing, at this point anyways.


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Re: New girl from Nottingham

Post  itchyandscratchy on Fri May 13, 2011 3:53 pm

Yeah I get that prickly feeling sitting on a chair, not as intense as you're describing though, and not as far down as my thighs, mainly just around the ass area...

*sets off to google PNE*

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Re: New girl from Nottingham

Post  Sebby (Admin) on Sat May 14, 2011 9:34 am

Welcome to the forum...deff do some research yourself. Im sick of doctors misdiagnosing either that or telling me its cos Im anxious!

I'm on Pregabalin (anticonvulsant) 300mg and for the first 6 weeks I did feel like I had started the day with a bottle of whiskey! The side effects have pretty much gone now and I have had relief from the more severe pain.

As for having a baby, yes I worry that if I was pregnanat how would I cope with no pain killers but to be honest if you really want one I believe that desire will give you the strength you would need to get through. Also I do wonder if being pregnanat would effect the symptoms? I mean my worst flare ups are just before coming on my period or just after so 9 months of no periods would suit me just fine lol

I also agree with seeking healing rather than focusing on cure.....even if I was never completley cured I would be happy just to have long term relief from the severe flare ups even if that meant I still got low level pain


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Re: New girl from Nottingham

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