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Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

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 …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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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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Finally found what I think is wrong with me!

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Finally found what I think is wrong with me!

Post  Emily20 on Sun Dec 26, 2010 11:31 pm

I've been suffering for the past 4yrs or so with what I thought to be Cystitis, however, I've always known that it wasn't quite the right symptoms for cystitis. Anyway, with another bout of what I thought to be cystitis today, I got quite sick of it and decided to research further and found Vulvodynia - symptoms match almost perfectly and I feel pretty relieved. However, I've yet to find a doctor in my area good enough to diagnose me with it, if this is what it is. My current Doctor keeps diagnosing me with cystitis, however the pain had always been external, and has made me unable to work, sleep or go about my daily life as normal. It only comes on in bouts of pain and I don't always have it. However, when I do, I need to sit on the toilet for hours on end until the pain has gone as this seems the only way to relieve it. I also find drinking lots of water helps which sounds like a water infection but all the symptoms of Vulvodynia match up too.....this is now the only thing I'm doubting. I also get dull aching/burning pains in the vulvic region when I sit for too long which I've always thought strange until now. After sexual intercourse I get what feels like a friction burn - another symptom explained! I was also wondering where everyone is from? I'm from the UK and it seems most cases are in the USA, and unfortunately all the treatment seems also to be in America. Just wondering if anyone knows of anywhere in the UK and if anyones had the similar symptoms of prolonged time on the toilet and drinking lots of water to relieve pain? Any help would be fantastic!
Thanks. :-)

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Location : UK

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Re: Finally found what I think is wrong with me!

Post  Sebby (Admin) on Tue Dec 28, 2010 11:38 pm

Hi Emily and welcome to the forum

Im from the UK..and so are many of the members on here. We also have members from the USA and other countries..

When I was first having the symptoms on a regular basis I thought it was thrush and so did the GP. I got a little suspicious after my tests came back negative of course! Its so common for drs to either think its a yeast or unrine infection.

Im guessing the main reason so much time on the toilet helps is that you having nothing putting pressure on your vulva area and so find the pain calms down. I too find sitting painful so tend to sit with my legs up on the sofa or lie down. The pressure on the vulva area does make the syptoms worse. I get stinging, burning and rawness. Its like if any part of your body was sore pressing it makes it feel worse!

A good tip one of our members has given is to get yourself a doughnut cushion..it has a hole in the middle so you can sit on it and have no pressure on your vulva area..much like a toilet seat!

I can also relate to the friction burn type pain after sex..I have always had this after sex so its been an issue as long as I have been sexually active. I am not in a relationship at present but in terms of sex I have found that being intially on top helps as you have more control of thrusts and also lots of lube!! Also on the painful days try other forms of sexual pleasure and don't worry to much if you cant always have intercourse..Ive never been the type of girl who could 'go at it' every day lol so have had to be quite creative!

I havnt tried the drinking water thing..I mite just do that although I can see that I will be then spending a lot of time on the loo! There is one theory that there is a certain substance called oxalates which are thought to irritate vulva tissues as its found in urine and that by drinking lots of water helps to decrease the absorbtion of these oxalates so they will of course irritate the tissue less. There is also a special diet that you can follow to reduce oxalates in the body..unfortunatly oxalates are found in chocolate and tea!! Anyway I did read in the 'Vulvodynia Survival Guide' that by drinking lots of water you can reduce the Oxalate crystals in your urine by up to 80% anyway by drinking lots of water whereas following only the diet will not reduce it half as much..

As for treatment in the Uk I suggest asking your dr to refer you to both a Vulva Clinic..yes we have clinics just for vulvas! who knew! and also a pain clinc. They can then both look at various treatments from medications to nerve blocks etc whatever works for you. I also suggest as many of the members have suggested to me to get physical therapy. I am getting refered for this in the new year and have received two recommendations from emailing this website


I hope some of this info can get you started..dont give up if one treatment does not work keeping going thats what im doing

Godbless and Take Care


Sebby (Admin)

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Join date : 2009-12-03
Age : 37
Location : London UK

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