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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

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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