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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 …

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

suffering in silence?

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suffering in silence?

Post  missnik1 on Mon Jan 09, 2012 8:59 pm

i feel like ive been suffering in silence for the past couple of years. i have trouble opening up about my issues..my moods definitely reflect my pain though. but no one around me seems to understand because they dont know what im struggling with on a daily basis. i could use some support from others in my same situation, i just turned 23 have had vulvodynia for past 2 years. im also in a long term relationship that is heading south fast thanks to the detrimental effects of this frustrting disorder! i need something to be hopeful about , to look forwrd to, new hope i guess. ive tried seveeral treatments with no relief and im sick and tired of making doctor appointment aftr apointment. i dont have the best of insurances (just state). so i feel like im not getting the best of care either. like my problems are getting brushed aside. i need tips on how to find a good doctor and how to make the most out of my appointments. i get anxious beforehand and feel like i leave a lot of things out during our discussion. and just leave there not feeling any better about myself. how do i open up and make it sound as serious as it really is? i want the doctor to understand my concerns and my pain.


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Re: suffering in silence?

Post  Sarah001 on Tue Jan 10, 2012 7:56 pm

Write it down if you forget stuff then you have the paper as a reminder and a distraction to look at if you struggle to open up. I can't help with the insurance issues becuase I'm in the UK so I don't fully understand it but don't let them fob you off, write it down so you get everything out in the appointment.

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Re: suffering in silence?

Post  ButterflyLiz on Wed Jan 11, 2012 8:06 pm

I second Sarah’s suggestion; I get nervous & forget things too and taking along notes for the doctor is a brilliant way to get around this. If you look at my post on another thread here: http://www.vulvodyniasupportforum.com/t648-my-belated-story you can see the layout I use. I take two copies along to appointments; one to refer to myself and one the doctor can keep in my file. Don’t be afraid to include the psychological impact this condition has had on you. I hope reading around the forum has helped you to feel less alone. There are lots of us out there! x

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Re: suffering in silence?

Post  unga on Fri Feb 17, 2012 1:48 am

hello, I totally understand what you're feeling, after 3 years I have just found a doctor who is understanding and exploring various treatment methods with me. This happened because I pretty much had a breakdown at the reception of the doctors surgery and the receptionist who had seen me there often told me there was a new doctor at the surgery who she thought would be hepful, and she was...this was a stroke of luck, but it shows that they do happen. My advice to you, as some other people have said, is write everything down and then make sure you say it, it's easy to get distracted or to belittle your experience... do not do this, this is a serious situation that affects all facets of your life...tell them everything that has been affected. I hesitate to write this but I have found male doctors to be unhelpful (this is only my experience I am not at all suggesting that a male doctor could not be helpful; sadly one of the ones I saw insinuated that I didn't know how to have intercourse properly, if I wasn't so offended and embarrassed I probably would have punched him), and the most helpful doctors have been young women. I think just being calm and making sure you say everything you want to say is important. best of luck to you Xx


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Re: suffering in silence?

Post  noni on Fri Feb 17, 2012 3:13 am

Hey Miss!

Your dark feelings are normal with this condition. We've all been there.

Have a look around and read about us. We're like sisters on here.


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Re: suffering in silence?

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