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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
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

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

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 …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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


How do you live with this?

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How do you live with this?

Post  Persevere1990 on Wed Feb 22, 2017 12:15 am

Hi everyone,

It's great to see there is a support network here... I was diagnosed a few weeks ago and have started nightly treatment with lidocaine cream one week ago. Not noticing any difference yet.

I notice I get flare ups throughout the day, typically after peeing, showering, walking and when I'm stressed. I'm pretty sure my vulvodynia was caused by nerve damage due to a bad case of thrush over Christmas.

I am really struggling to cope with this condition so far and get very anxious when I'm at work or out the house about it. I'm panicking that I'm never going to have a day without pain ever again.

Does anyone have any similar experience or advice to share?

Thank you
Xxx

Persevere1990

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hang in there

Post  amf329 on Wed Mar 08, 2017 10:36 pm

Hi there,

I just wanted to reach out to say that I'm sending you hope and healing vibes.

I've been dealing with this issue - though I've chosen not to label it V because I know it's not just that, and claiming that it is just labels me as 'sick' - for over a year and a half now BUT I am SO much better than I was when it first started. And that was pretty horrific so I have a lot of empathy for where you are right now. Just take it one day at a time, ok?

While I'm not 100% healed, I'm very close - and I have tried a lot of things to get well... and am still figuring out this last piece of the puzzle... But I have had weeks of no pain at all so I know I can get there. And I know you can too.

My first suggestion is to decide you will get well. The second is to use what you need to by way of prescriptions/medications/etc. to get through this part. While I'm not a huge proponent of drugs because they don't heal but they CAN help when the pain is bad. And my third is to search this forum for success stories and stories of healing and hope, as that will help ease your mind.

We're all different and we'll all healing on some level though it may be by different methods so stay open to what may work for you...

hugs,
A

amf329

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Thank you!

Post  Persevere1990 on Thu Mar 09, 2017 8:43 pm

Thank you for the reply A, it makes such a difference being able to talk to someone who really understands.

Over the last two weeks I have started taking 30mg Nortryptiline every night and it dramatically decreased my pain levels. Over the last 5 days I have been mostly pain free with just a few hours of pain on one or two days. I am hoping the pain can be reduced further by staying on the medicine. I have been to have accupuncture too, twice now and hope this is also contributing to the results.

Can I ask what has worked well for you in terms of treating the pain?

Persevere1990

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Things to try

Post  ellenb on Tue Mar 28, 2017 1:30 am

I know this may sound silly but it has helped me some. Get a squirt bottle and rinse after you pee. This helps if residue from your urine is causing the pain. I've been taking gabapentin, seeing a physical therapist. Steriod cremes and lidocaine have not helped me but everyone is different. I feel your pain!! Good luck

ellenb

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Re: How do you live with this?

Post  Madsmum on Wed Mar 29, 2017 5:27 pm

Hello
My 12 year old daughter has vulvodynia and has had it for about 4 months. It was awful not knowing what was wrong with her but knowing has made it a bit easier to try to deal with after lots of misdiagnosis that made her pain worse. She has missed nearly the whole term of school but has managed 10 days since half term and she has caught up with her work. She is seeing a vulva specialist who prescribed instillagel which is a lighter form of lidocaine. Lidocaine ust stung her but the gel doesn't hurt and can be used as often as every 30 mins. The specialists says to use it at least 4 times a day or when you need to and it can be used with other creams like emuaid. We tried emuaid but we are not sure it worked. I got her a bony parts cushion which she says helps in the car and on soft furniture but not on hard seats so I have ordered a Bonmedico orthopaedic surgical ring donut pillow for her to use at school as the hard seats take their tole the next day and it takes the pressure of according to people with piles and some vulvodynia sufferers use memory foam donuts so I thought I would try something more orthopedic.Vagikool was recommended by the specialist it's a gel ice pack that you freeze put in a sleeve and put it in your underwear and this is the only thing that really seems to help my daughter straight away. So I bought 4 of them

Madsmum

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Re: How do you live with this?

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