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

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

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.

Comments: 1

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 …

Comments: 0

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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

Hello!

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 …

Comments: 0

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


another website!

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another website!

Post  naomi on Mon Aug 02, 2010 8:17 pm

http://www.vulvodyniasupport.com/guest1.html


"Vulvodynia interferes with daily functioning, such as sitting walking and most other physical activity. It often affects one's ability to engage in sexual activity. It can impair one's ability to work, and participate in a social life. These limitations often lead to depression and thoughts of suicide.

We need ongoing and multiple approached researchers to learn the underlying cause of Vulvodynia. We need proper care and medications that help control the pain and discomfort, that helps all forms of Vulvodynia patients to cope with their daily lives. We need dedicated professionals to start and continue researching this disease until a cure is found. We need compassionate professionals to join in the fight against the ignorance that engulfs the sufferers of the disease. We need dedicated people who are committed to figuring out what causes Vulvodynia, and how to treat and cure Vulvodynia.

It has been over 100 years since the "discovery" of Vulvodynia and yet Vulvodynia is virtually ignored by the medical and research community. It is time for the medical and research community to step into the 21st Century and recognize and legitimize our disease and pain by forming a national research foundation that will continually study this disease until a cure is found. It is time to stop our suffering!"

Lauren Kunis New York City USA



Here-here! I completely agree Smile

could we not go public and DEMAND more research into this area instead of researching into...oh I dont know I cant think of anything witty right now!!! Very Happy
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Re: another website!

Post  Sarah001 on Mon Aug 02, 2010 8:30 pm

I'm not quite sure if that website is still active, the guestbooks are from years ago and the link to the recent one doesn't work on my computer at least. The most recent guestbook seems to be from 2002 so it looks like the campaign with the open letter was a while ago and clearly didn't help or we wouldn't all be wondering how to help ourselves now!!
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Re: another website!

Post  maggie on Mon Aug 02, 2010 8:34 pm

100 years since the discovery of vuivodynia, yet the GP's have never heard of it, i can't belive that it's been around that long.

maggie x

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Re: another website!

Post  naomi on Mon Aug 02, 2010 8:38 pm

DOH!

Well I have plenty of time on my hands to keep plodding along with the research and pestering specialists now I have lost my job through this!!!!!! grrrrrrr

On my good days I feel up to it so will continue with my plodding. Hopefully will uncover some answers for us

xxx

these support groups might still be alive...maybe!
http://www.vulvodyniasupport.com/support.html


Last edited by naomi on Mon Aug 02, 2010 8:42 pm; edited 1 time in total
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Re: another website!

Post  maggie on Mon Aug 02, 2010 8:41 pm



Well done you, keep up the good work. thanks for info.

maggie

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Re: another website!

Post  naomi on Mon Aug 02, 2010 9:45 pm

RIGHT! try this link folks...

http://vulvodyniasupport.com/
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Re: another website!

Post  Sarah001 on Tue Aug 03, 2010 11:31 am

I applied to join the yahoo group for vulvodynia and finally got accepted after a few weeks only to find I'd stupidly forgotten my yahoo account details and couldn't sign in! I've reapplied but heard nothing yet strangely I'm receiving emails from some members of that group in my email account?! Some seem to be spam and others seem to be genuine asking for advice (which I don't really have). I'm not totally sure it isn't the same stuff that's on Dr Glazer's site in the guestbooks, I'll have to wait and see if they will accept me again and perhaps I can remember my details this time! Embarassed
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Re: another website!

Post  Sebby (Admin) on Tue Aug 03, 2010 11:40 am


I did the same thing Sarah! I applied for the yahoo group but never got nothing back and then forgot my log in details! Oh well lol

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Re: another website!

Post  Sarah001 on Tue Aug 03, 2010 11:57 am

I'm pleased I'm not the only airhead!! Laughing I made a point of writing them down this time but as they haven't replied I probably won't need them now I've got them! Rolling Eyes
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Re: another website!

Post  Sebby (Admin) on Wed Aug 04, 2010 9:20 pm


Why dont the plonkers reply! Question lol
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Re: another website!

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