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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


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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 …

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

New member - Glad to find this connection

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New member - Glad to find this connection

Post  Laura on Wed Aug 24, 2011 7:41 pm

I discovered this site yesterday and like most people here, feel so reassured that I'm not the only person in the world trying to live around this pain. My symptoms started after I was diagnosed with interstitial cystitis almost 20 years ago. Since then, the I.C. smptoms have abated but i have Vulvodynia flare-ups for no apparent reason lasting from a few days to months. So many comments here have resonated with me. Did I do something to cause this? How do I prevent my life from revolving around this? How do I stay engaged in the world when I just want to curl up, not talk to anyone, and stop hurting? Have seen many doctors, received varying diagnoses. Tried lidocaine ointment, biofeedback, diet changes all with no effect. Exercise helps mentally, but when I need it most it's the last thing I feel like doing. I'm 52, live in Arizona. This group feels like a lifeline.


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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Aug 25, 2011 11:56 am

Hi Laura and welcome. Hopefully you'll find some interesting threads on here and feel free to discuss anything and everything with us all, we're like one big family on here!

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Re: New member - Glad to find this connection

Post  Zazu on Fri Aug 26, 2011 12:11 pm

Hi Laura and welcome Smile
I hope you find lots of support and advice on here - and that it helps you feel connected. I identify with a lot of the questions you mentioned, too. In terms of what you've tried - it doesn't sound like you've taken the 'drugs' route yet. A lot of women understandably are hesitant to start taking amitriptyline, gabapentin, etc. etc. One thing you might want to talk to your doctor about is a compound cream where they put one of the nerve calming drugs into an ointment or gel. Right now I'm using a 6% gabapentin, 5% lidocaine in diffusimax gel It's a good intermediate option.
Best to you! Be well!


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Katie + Laura

Post  Aussie on Mon Aug 29, 2011 3:17 am

Could you please tell me the base that is in your cream. Is it compounded with something non irritating like parrafin wax? I want to try this but not yet available in Aus. My doc said he will do up the script if I can find what base others are using. I also am interested in the Ami/Balofcen (sp) gel. Nerve med/muscle relaxant compound.

Laura, you have come to the right place. I suffer with IC too. How did you resolve your symptoms? at the moment I am doing IC diet, oxytrol patch, heaps of water and heat and have ordered cystoprotek and prelief for meals.

Glad to hear this part has subsided for you (remission?! Smile) dealing with both IC and V is tough, very tough!



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Re: New member - Glad to find this connection

Post  thiemli on Wed Sep 21, 2011 6:39 pm

I am new here too and am looking to see if anyone had success with the neogyn cream? I have seen several docs and all say to stay away from all creams. I have tried them all i feel like. I do think my symptons subside when I use nothing but sometimes unbearable. I am a mother of 4 small children and feel like i can't take care of them when I am in pain. It is terrible. I know it is worse for some of you. Mine (vestibulitis) comes and goes. I actually had it gone for over a year and a half and it returned. I thought the birth of my children is what brought it on and when pregnant or nursing i would get inflamed. AUUUUGGHHH. just looking for something to survive right now. Surgery is not an option with my small children that is my doctors next step.

Please advice if you have used neogyn or found any temporary relieve


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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Sep 22, 2011 10:10 am

We've actually got some ladies trying neogyn at the moment but I don't think any of them have reached the end of the recommended trial period yet, I'm sure they'll update us all when they do so keep coming and checking.

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Re: New member - Glad to find this connection

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