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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» 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

» 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
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» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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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.

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 …

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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.

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


young daughter with vulvodynia

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young daughter with vulvodynia

Post  Drv on Sun Jun 03, 2012 5:29 pm

Hi there

I have found this forum and I wonder if any of the members are mums with daughters with vulvodynia. My daughter, age 12, was diagnosed with it last October and since then her flare ups have been progressively worse. She has hardly been at school this year and the pain she experiences is so severe that she can hardly move, sit down, not to mention going to the toilet. Not being a vulvodynia sufferer myself I cannot relate to what she is going through. Any suggestions, info that could help me understand this condition better from a sufferer's point of view would be very appreciated.

Thanks in advance for your time.

Debbie

Drv

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Child with vulvodynia

Post  Debbie627 on Mon Jul 30, 2012 11:44 pm

What types of topical meds are you using? What detergent do you use? And does she use cottonelle wipes thinking they are soothing?

I've said this in many of my other posts...avoid all products with propylene glycol. That means most steroids, lidocaine, soaps, detergents etc. read your labels. Propylene glycol is like lemons on a paper cut, but somehow it has found its way into products that we are applying to very sensitive areas and it burning us!


Last edited by Debbie627 on Tue Jul 31, 2012 12:11 am; edited 1 time in total (Reason for editing : More info)

Debbie627

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Lots of things to look into

Post  Rainy Day on Tue Jul 31, 2012 12:02 am

I am still trying to get to the source of my problem, but I am think I am getting a little closer (I broke my tailbone in 2 spots). With that said, here are my suggestions:

Get an xray. See if her pelvic alignment is off...and see if there are any other issues
Test the ph of her urine. See if it seems acidic
See a natural doctor. The real doctors aren't helping me at all. Get allergy testing. See if they will test for bacteria, yeast, etc. I am looking into a yeast dna test as well
Try some food cleansing (raw foods or some other type of colon cleansing). Just because a doctor doesn't think its yeast/bacteria, doesn't mean they are right. See a natural doctor for help on doing it the right way. Keep a calendar of all the things you try.
Try a probiotic...maybe her flora is off down there
Maybe its hormonal (my cousins was due to hormones)
Try rubbing something like coconut oil on it at night. Most other things maybe worsening the condition

That's all for now. It could be so many things. I feel her pain. I am at teh end of my rope all the time with this...and still tryign to put the puzzle together. Just don't rely on the doctors too much. They just try to push pills usually.

Rainy Day

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Best advice I can give

Post  Mandadity on Wed Aug 01, 2012 10:47 pm

As not being a sufferer yourself its hard to imagine just how much this hurts. The best thing I can tell you is its real, and dont for a second think shes faking it...this really hurts...I have had a child myself and let me tell you, contractions hurt but this hurts waaaayyyy more.

Get her a counselor or her best friend(that she talks to about this problem) to come over as MUCH as possible...you may be her mom but believe me, I(got it at 17) REFUSED to even mention it to my mom.

This is so much easier talking to someone about it even if they have no advice(because doctors are who gives her advice). Don't get me wrong, if you and your daughter are really close then give her more attention then anything else in the world...because, just because you give her attention about her pain and talking to her about it, doesn't mean she wouldn't like/need a day out being with her mom and being a normal girl.

I am 22, with a 1yr old daughter and I still cant be a normal girl... I have noticed over the many years of having this that I have become very distant with any and everyone and mostly shelter myself in because im afraid to let anyone in and afraid to be out and have my pain. I got VERY VERY little comfort, support and understanding from anyone in my life about this. I was a VERY talkative and social girl before I got this. I was also very confident.

I am in NO MEANS trying to scare you, I am just giving you a way to see in her head...she may be a little different because shes had it less but just know, attention, understanding, support and treating her like a normal girl in every other aspect she will enjoy, like I said earlier...even a mommy/daughter day out every now and then JUST to bond and be normal will be gold to her and knowing she was never alone will really help her mentally. This has a huge toll on her emotions and mentality also which is why its SO important to have at least ONE person she can always turn to, to vent, talk about it, whatever she needs.

Just be open to ideas and listen to what shes saying, she may not directly come out and say "I need someone to talk to about this"(for example) but if she starts to talk to you and open up to you and you want to be close to her, then dont judge, lecture or anything else except try to understand her pain, ask her questions...be her best friend in this and trust me she will look back and always love you for this.

I wish I had this with my mom.

Good luck debbie...if you want to know anything more about how its affected me so you can prevent your daughter from going through this the way I did, I am more then okay to share.

Mandadity

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Re: young daughter with vulvodynia

Post  kellybeth on Sat Aug 11, 2012 10:40 pm

Hi Debbie. My daughter is 8 years old and has been suffering from vulvodynia since she was 3. I can relate to your story so much. My daughter also is up in pain nearly every nite and has missed lots of school. She is currently going through pain management and has been put on amitriptyline which does not help one bit. Seems like an never ending battle and its heartbreaking. Please feel free to messege me if u need support or a chat your the first mum with a child suffering I have found. Take care,Kelly.
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Re: young daughter with vulvodynia

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