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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

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Yesterday at 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 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

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 …

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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.

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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 …

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Vulvodynia and IC...and a question

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Vulvodynia and IC...and a question

Post  missuswells on Mon Feb 20, 2012 9:17 am

Hi there! I was recently told I have vulvodynia along with IC (interstitial cystitis). It wasn't a surprise to me as I've been dealing with these symptoms since I was a little girl. But here is what I'm wondering...is vulvodynia really the right term for me?

You see, I don't actually experience pain in my vulva. I experience it inside my vagina. All the descriptions I've read of vulvodynia say its around the vagina, not inside. I experience burning, pain, and discomfort inside, especially during sex. However I don't believe it to be vaginismus because I've always been able to use tampons and can have sex easily, or start to anyway...I have no troubles with my husband getting inside. It just hurts like hell when he does.

So is that still vulvodynia? I want to be as educated as possible to help myself. Along with these, I have fibromyalgia, depression, generalized anxiety disorder, and adult ADD. With all these physical and mental ailments, I'm used to being incredibly well-read about everything and making educated choices about my challenges. So any opinions on if vulvodynia seems to be the most correct diagnoses would be helpful...I know you guys aren't doctors. But anything helps Smile thank you!

Rachelle

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Re: Vulvodynia and IC...and a question

Post  ButterflyLiz on Mon Feb 20, 2012 4:01 pm

Hmmm, interesting question. I've wondered in the past where the dividing line between vulvodynia and "something else" falls! Weird question but how far inside does it hurt? I do have pain round the vestibule & sometimes further out too but my sorest spot has always been about one inch inside along the back wall of my vagina. Have you had a poke about yourself to see if you can identify any specific sore areas? I only ask because when I try & have sex it feels like everything is hurting inside & it's hard to tell exactly where the pain is coming from, but when I examine myself it's actually mostly coming from that one part. Nothing further in than that actually hurts inside. I have a theory that all the pain I now experience originated & radiated out from that one spot.

If it only hurts when the sore area is touched, that would be provoked vulvodynia (as opposed to unprovoked, which is pain all the time).
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Re: Vulvodynia and IC...and a question

Post  missuswells on Mon Feb 20, 2012 7:02 pm

I did at one point do lots of "poking around" to figure out where exact pain was...I have one spot right above the opening that is intensely painful when touched. But when I have sex that isn't what bothers me...it is the feeling in the vaginal canal. Can it be stemming from that one spot? And is that still vulvodynia?

I find the most relief when I use lidocaine *inside* my vagina, not in the vulvar area...so I know that's where most of the pain is, besides from the one spot outside. And that one spot only hurts when touched, but the inside of my vagina hurts all the time.

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Re: Vulvodynia and IC...and a question

Post  ButterflyLiz on Mon Feb 20, 2012 7:36 pm

In all honesty, I don't know... vulvodynia is technically pain in the vulva, and the vulva is by definition the external genitalia only. However, it does seem that vulvodynia pain can spread all over the place.

Would be interesting to see if anyone else has mostly pain inside?

I know on the thread about instillagel (http://www.vulvodyniasupportforum.com/t670p15-lidocaine-beginner-question) a couple of the ladies were saying it worked best when they injected it inside.

Liz
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Re: Vulvodynia and IC...and a question

Post  everclear on Sun Feb 26, 2012 6:33 am

Yes. I just posted my own story in the New Members forum. I only feel pain inside, I don't have any external symptoms, so I wasn't sure if it could still be vulvodynia?

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Nov 20, 2013 10:04 am

I have pain inside!!! And I have been using lidocaine inside too. Please msg me if you see this because I'd love to chat. It seems like there were quite a few girls and women who had like my exact thing but they don't seem to come on here anymore and all the posts are over a year old Sad
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Re: Vulvodynia and IC...and a question

Post  Alana3 on Wed Nov 20, 2013 11:51 am

Have you been tested for strep tinkerbelle?

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Nov 20, 2013 4:05 pm

No I haven't, is it something that may be worth asking to be tested for?
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Re: Vulvodynia and IC...and a question

Post  Alana3 on Wed Nov 20, 2013 4:32 pm

It can cause internal burning...

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Re: Vulvodynia and IC...and a question

Post  lonelyone48 on Sun Dec 01, 2013 5:58 pm

My pain is unprovoked, but I can touch where I believe the pain comes from. On a clock it would be 6 and it feels like scarred tissue. On initial penetration it burns a little, but once its past that point it doesn't hurt at all. The next day or two are very painful. I have mostly itching and throbbing in the entire area includinding my clitoris.

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Sun Dec 01, 2013 8:55 pm

Lonelyone mine feels a bit like scarred tissue also Sad
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Re: Vulvodynia and IC...and a question

Post  lonelyone48 on Sun Dec 01, 2013 10:27 pm

I had a vaginal hysterectomy in 2001 and wasn't diagnosed with Vulvodynia until 2005. The doctor I'm seeing now is the one who thinks the instruments used during my hysterectomy caused nerve damaged and it is in that area the skin looks scarred. Makes me angry just knowing this painful condition could have been prevented.

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Re: Vulvodynia and IC...and a question

Post  tinkerbelle2 on Wed Jun 18, 2014 9:43 am

That's terrible! Most treatments in health care seem to come with terrible side effects, or create new problems! My mum had an op to have a polip removed from her uterus and then ended up with a prolapsed disc causing terrible back and leg pain and some permanent numbness! We think it's because they moved her roughly.
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Re: Vulvodynia and IC...and a question

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