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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 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

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 1

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 …

Comments: 0

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 …

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


Vulvodynia?

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Vulvodynia?

Post  acidfairyy on Mon Jul 11, 2011 5:02 pm

Hi all, I'm Nikki, 23 and from Warwickshire in the UK.

A couple of months ago I got my first ever UTI and ever since then I have had problems with feeling sore 'down there'. At first I thought it was another UTI, but it wasn't. Then I thought it was thrush, but it wasn't.

Three weeks ago I went to my GP who had a look and took some swabs. All the swabs came back normal. She said it looked red down there but she did say I have some small white spots in a line which she seemed quite perplexed about. I have wondered if I might have lichen sclerosus instead of vulvodynia, but my symptoms seem to fit vulvodynia more.

Anyhoo, she gave me some Dermovate and some Epaderm to use as a soap substitute. It seemed to be working, then it stopped. Then it started working again... but currently it is not working.

My symptoms are an almost constant feeling of soreness, and it tends to be triggered by getting hot and sweaty, going for a wee, or sitting on a hard surface (not ideal as my Saturday job has me sitting on a stool; I might take a cushion in). I sometimes got itchiness but that's pretty rare.

I have a follow up appointment with my doctor next Tuesday (19th) and she said if things haven't worked she will send me to a vulvar specialist. She is a brilliant doctor and she said the specialist is great too, so I am hoping I will get a diagnosis, just not looking forward to the inevitable long NHS waiting list!

So, does it sound like vulvodynia? I can't think what else it can be aside from lichen sclerosus, but I will definitely tell her I want this referral. It gets me down sometimes so I'm trying to stay positive, but I've only had it since April and I can't imagine living with this forever. Then again, there are worse things in life!

Nikki x

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Re: Vulvodynia?

Post  Sebby (Admin) on Tue Jul 12, 2011 6:01 am


Hi Nikki and welcome to the forum

Vulvodynia basically means 'vulval pain' and is a description of a set of symptoms rather than a diagnosis.

"Chronic itching, burning & pain that causes physical, sexual and psychological distress" - from The Vulvodynia Survival Guide (Glazer & Rodke)

Causes can vary so even if you do have it you need to research and try different treatments.

It sounds like a good idea to go to a Vulval Clinic, gynea and dermotology if you can. Hopefully the one your GP knows will be great, but here is the link to the list of Vulval Clinic's in the Uk if you need it

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics#1424

The website has changed a bit so you do need to search for your area.

I have constant soreness too and its triggered by anything touching the area, sitting etc. I am trying the Pelvic Floor theory at the moment. Bascially that an unstable and tense pelvic floor prevents the vulvar area from healing and being healthy (by a release of certain chemicals and prevention of proper blood supply to the area)

I do suggest getting yourself a copy of 'The Vulvodynia Survival Guide' as it explains a few theories etc and is a good all round introduction to the condition.

So get yourself to a clinic and dont give up, you are already way ahead than many women who have rubbish GPs! Hopefully a good treatment plan can be drawn up asap!


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