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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» 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 …

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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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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

Found the cure to my vulvodynia

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Found the cure to my vulvodynia

Post  anonymous12345 on Mon Apr 01, 2013 3:57 am

Hi everyone,
First of all, I wanted to express my sympathies with everyone posting on the forum. Vulvodynia takes a huge strain on your life and can change you as a person. I am 21 years old and have been dealing with what was diagnosed as "vulvodynia" for 7 months (I'd like to stress that this is not really a diagnosis but a catch-all term for vulvar pain when doctors can't figure out the cause or don't care to help you figure out the cause. I personally believe there is an underlying cause for everyone's vulvodynia). What a journey it has been. Going from doctor to doctor to find an answer. Interestingly enough, the doctor who found the solution wasn't a gynecologist at all... But a gastroenterologist. She suggested many things, one of them being a milk allergy or lactose intolerance. She had me eliminate dairy from my diet completely. Check all labels because milk/casein/whey/lactose is hidden in many foods that you would never expect! Within 48 hours I noticed a HUGE improvement. And since then, whereas most days I feel 20%, nowadays I feel 90%-100%. I wanted to share my story with everyone, in hopes that I could help another woman escape the misery of the burning, aching, and stinging of vulvodynia. Good luck to everyone, you are in my prayers.


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Re: Found the cure to my vulvodynia

Post  Loulou on Mon Apr 29, 2013 7:02 pm

Hi anonymous12345 - so pleased you found your cure! Isn't vulvodynia a wierd thing. So many different causes. Thanks for sharing your story - it all adds to our knowledge!


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Post  Annie82 on Tue Apr 30, 2013 8:36 am

Hi anonymous12345, what symptoms did you experience? How did it start?


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found the cure

Post  BeeJay on Fri May 03, 2013 1:00 am

I am so interested to hear about the views of your gastroenterologist. I too am lactose intolerant, and have always suspected there was a connection between what I eat, and how I feel down there. Do you take any type of lactase enzymes as suppliments?


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Re: Found the cure to my vulvodynia

Post  anonymous12345 on Mon May 13, 2013 6:43 pm

Hi everyone! Thanks for responding.
Loulou, I was happy to share my story! I am blessed that it is now a happy one.
Annie82, I woke up on my 21st birthday with a terrible burning sensation on my vulva area and my anal area. The burning was very intense. What a way to start your birthday! Throughout the following months, I would get fissures on my vulva and anus and they would take a long time to heal. I would also have this deep burning feeling that would come and go for days at a time. Went from doctor to doctor for 7 months (4 gynocologists, 1 dermatologist) and had no definite answers. Was misdiagnosed many times. One gynocologist tried to tell me I probably had herpes even though my blood tests were all negative, all swabs were negative, and the only partner I ever had was negative. The dermatologist told me I probably had lichen sclerosus after a skin biopsy showing minimal scarring. What I found was that many doctors give you their answer so you will stop coming back, but I wasn't going to give up. So I went to a GI doctor, who I would declare a saint if I could. I seriously owe my happiness to her. I am not bashing all doctors, my dad is one, but I did learn that not all doctors provide the best care. I feel 100% every day, except for the 2 days after my period... The deep burning comes back! But then goes right back away. If this is my only problem for the rest of my life, I consider myself very lucky!
Beejay, the only time I take the enzymes is if I'm eating out and am not 100% sure what is in my food. I also take a daily probiotic. What is strange is that I do not show any other symptoms of lactose intolerance... No stomach ache, gas, diarrhea. Only pain down there!
I am not a religious person, but I pray every night to give thanks that I am now healthy. I also pray for other women to find their cures. Best of luck to you three!


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Post  allforone on Tue May 14, 2013 1:33 am

So glad to hear of your success............I too have been battling this issue for months......I was actually wondering if it could be something I'm eating or drinking. I drink very little milk, but I know there is milk in things you can't imagine.
My question to you is.............did you have any other burning besides your vulva and anus? I have it bad there, however it is also in other areas of my body too.........sometimes legs, feet, arms, lips and tongue. Drives me crazy!!!
It all started in the vulva though and gradually radiated to other areas........I'm beside myself and have went to all kinds of doctors also. Very aggravating!! Ugh!


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Re: Found the cure to my vulvodynia

Post  anonymous12345 on Tue May 14, 2013 6:30 pm

allforone, no I did not experience symptoms elsewhere. My symptoms were all limited to my underwear area. It wasn't just the milk I was drinking (I wasn't drinking that much), but the cheese and butter I was consuming daily as well. Once I cut all that out of my diet, I started feeling better.


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Burning in other areas

Post  Rainy Day on Sun May 19, 2013 11:01 pm

When I flare, I do too sometimes burn in other areas. The way my physio explained it is that one nerve (down there) gets ticked off...and starts communicating with other nerves...and gets them all ticked off. At my worst point, I burned even in my arms, back, boobs, face, etc. At my very worst, i could even focus on my hand...and make IT BURN! It's very much your brain involved...stress...nerves. Since then, my flares pretty much stay in just the legs. And, I am learning to control those flares by reducing anxiety. Anxiety is my trigger. My skin has been sensitive ever since I got V over a year ago. I rub baby oil all over my skin every day...since I feel the slightest bit of dryness. All this has improved though now that I understand a little how this beast operates. So, you aren't the only one that had other burning areas. And, yes, it does get better.

Rainy Day

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Re: Found the cure to my vulvodynia

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