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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» 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

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


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

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

Newly diagnosed and shell shocked

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Newly diagnosed and shell shocked

Post  Lindilou on Tue Feb 14, 2012 4:20 pm

Hello, I'm Lindilou, got diagnosed with Vulvodynia yesterday, can't take it all in yet, printed off info, and I'm scheduled for a biopsy next month which I believe rules out underlying skin conditions. Scared rigid I'll scream the walls down when the doctor injects local anaesthetic and that I'll be in agony for weeks afterwards.
How can it not be agonising when it hurts to be prodded with a cotton bud?!
Feel ridiculous, deformed, stupid, and I hate my vagina and wish I could just have it removed. No sex unless I want burning and stabbing pain in clitoris, seams on pants irritate me, sanitary towels irritate me, right now just existing seems to irritate. I hate the fact that the clinic is in the sexual health building so I keep thinking anyone who sees me walk in will assume I've got an STI.
My skin 'splits' at the base entrance of my vagina but apparently I'm deep set so the skin there is a bit web like, can't see how anything can be done to change my anatomy.
I feel angry wretched and stupid stupid stupid.


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Re: Newly diagnosed and shell shocked

Post  ButterflyLiz on Tue Feb 14, 2012 6:35 pm

Hi Lindilou, welcome to the forum. Sorry to hear you are suffering. I remember how it feels to be so overwhelmed with information. Looking on the bright side at least you have managed to receive a diagnosis so you can start to work with your doctors into looking at treatments, and you have found this forum for support. It really is a wealth of info from people who understand what you’re going through.

Again, though, it can be a lot to take in and everyone’s case is different so have a read through at your own pace and see if anything strikes a chord.

We’re always here if you want to ask questions or have a rant. There’s also a “secret” facebook group set up if you’re on there, Naomi on here can add you if you PM her.

You are not alone and there are many things to try which might help you. Sending good wishes your way.

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Re: Newly diagnosed and shell shocked

Post  Lindilou on Tue Feb 14, 2012 7:05 pm

Thank you ButterflyLiz, I'm not on FB, I'm a bit older, I'm ancient lol in my 40's so the technological revolution passed me by, it's amazing I can email..I would very much like to hear from anyone who has had this biopsy under local anaesthetic. What was it like, is it survivable? Did it help?


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Re: Newly diagnosed and shell shocked

Post  Aussie on Wed Feb 15, 2012 4:57 am

Biopsy won't help the situation. If you have vv it will irritate it!

It sounds like you have it to me. If there is no visible change in the skin I doubt a biopsy is required. Doctors just like to test things so they look like they are doing a decent job.

This forum is the best place for info. I would suggest a less invasive test - get your serum (blood) hormone levels tested - ALL of them. See what comes up.

Get proactive about your condition - if you look at it in the right way it can empower you. There are so many things to try and if you don't keep posititive and focused you can really get down in the dumps.

Here if you want to talk (search the celebrating the positive forum) Smile


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Re: Newly diagnosed and shell shocked

Post  Lindilou on Wed Feb 15, 2012 11:04 am

Thanks Aussie this is my increasing feeling


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Re: Newly diagnosed and shell shocked

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