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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

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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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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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



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.

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Vulvodynia?

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Vulvodynia?

Post  Casscass09 on Fri May 20, 2016 2:34 pm

Hello,
This is gonna be a long story, sorry. So more than a year ago when I first became sexually active I gotta uti, and bacterial vaginitis. I got the uti to go away. But it took many courses of antibiotics the bv to go away. When it finally went away, I was still left with a symptom and that was it burning while I was peeling. After seeing my urologist many times she told me she thinks it's borderline IC. I never got any tests done for that because at the time she gave me pyridum to help with the burning. And for some reason after taking that my symptoms went away. Fast forward about 2 months and I'm still symptom free with the burning. But then I try to have sex again and it triggers my painful urination. But I noticed even before seeing a urologist for IC I had pain while having sex. It's hard to explain but when I'm having sex it feels like the walls of my vagina are being like scraped. They hurt. I don't know if that made sense but yeah. When I went to the gynecologist she took a look around and she told me the muscles of the opening of my vagina were very vey tight. And that made me think maybe it was pelvic floor dysfunction. But now that I'm looking up symptoms it's seems like it could be vulvoadyna. It hurt even when she swabbed the inside with a q-tip. The only time I hurt is when something is in my vagina. I sometimes get really itchy around the opening of my vagina. But that's like once every week. Maybe even less. Does anyone think it could be vulvoadyna? I've also got some weird discharge going one and I've gotten many tests done and have come back negative. I'm thinking that the antibiotics ruined all the good bacteria down there and that's what caused all this.

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RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 4:56 pm

Welcome Casscass09 and thanks for sharing your story.
What you're telling, let me think of provoked V or vestibulitis. This would not exclude the diagnosis you've got. Hope, you'll soon find out. Maybe you ask your gyn whether that could be a possibility.
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Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:00 pm

I'm sure the ladies on this forum are going to get sick of me writing this, but I want to make sure women understand what a vulvodynia diagnosis means. I really wish someone would have told me this earlier on so I knew there was hope for relief regardless of all the dismissive doctors I saw throwing around a vague vulvodynia diagnosis.

Vulvodynia isn't a single disease/condition for everyone. Vulvodynia is a diagnosis based off of elimination of other conditions (e.g. yeast, BV, STDs, etc.), and when a doctor cannot find a cause for the pain, they may diagnose vulvodynia, which is simply chronic vulvar pain without a known cause. Basically they are telling you that you're in pain, but they don't know why. Some women have a nerve issue, some have pelvic floor dysfunction, some have undiagnosed inflammatory conditions, some have unidentified soap/detergent reactions, etc..

Personally for me, all of my tests came back normal until I went to a vulvovaginal specialist who treats women with only certain types of vulvar pain. He diagnosed me with a very bad case of inflammatory vaginitis (IV not DIV) - if you are interested in what my test results showed to result in this diagnosis, let me know as I am happy to share them. My inflammation is not caused by an infection but is left over from too many antibiotics and multiple irritating treatments after an infection (a longer version of my story is linked in my signature). My issue is not nerve related or caused by unresolved sexual issues as the other vulvar specialists I've seen have insisted.

The only reason I'm telling you all this is to hopefully give you encouragement to keep searching for answers, and in my opinion, being told I had vulvodynia wasn't good enough for me since it didn't tell me what was actually wrong (just the opposite really - just a fancy medical term for an unexplained pain). Below are some suggestions and probing questions to hopefully head you in the right direction (some are obvious, but I have to include them just in case):

- Eliminate all chemicals that are coming into contact with your vulva. This includes: flushable or feminine wipes (they are the devil in wipe form), shampoo (my OBGYN has me washing my hair in the sink - he says it only takes a single drop in the shower to set off a reaction), laundry detergent (I make my own, but my OBGYN recommends All Free & Clear or Cheer Free & Gentle), shaving cream (my OBGYN recommends Vanicream Shaving Cream), super soft or scented toilet paper (lots of chemicals go into making super plush TP), not 100% cotton tampons/pads (I use a UK brand of organic 100% cotton tampons called TOTM - ordered from Amazon), douches, etc.

- If you are having sex, your partner MUST use hypoallergenic products also. Afterall, your partner's skin is coming into contact with you. So any chemical residues on their skin can rub off on you. It can take weeks to months for your skin to calm down. So give this a fair shot before writing it off.

- Did your doctor tell you what your vaginal pH is, or do you monitor it yourself? A higher pH doesn't necessarily mean an infection, but it could be a sign of low good bacteria, especially since you were on antibiotics. For me, my lactobacillus count is low (even though my PH is normal), and probiotics and pH balancing products were not enough to restore healthy flora.

- You mentioned you have discharge. Does it have a color or smell? Does your pain seem worse when it comes into contact with your vulva? Does it stick to your skin or ruin your underwear?

I hope this helps you a little to get to the bottom of your pain! As a wonderful lady on this forum (PainBlogger) once said "'Chronic' does not necessarily mean 'permanent'...Stubbornness pays with this condition. Be stubborn and don't give up hope."

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RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 5:13 pm

This is very important information which should be repeatet from time to time.
THANK YOU.
But personal, the diagnosis "vulvodynia" did not parrot something I already had guessed. It opens up to a special treatment which is not possible without. I mean drugs like Lyrica and other medication for neuropathic pain, even this is only one type of vulvodynia.
Another thought: Women who are pre-og postmenopausal, should think of measuring their estrogen-levels. Often too low levels and atrophy of the skin may cause generalized vulvodynia in women after the menopause. Topical estrogen may also be helpful for women suffring from provoked vestibulitis.
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Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:25 pm

You are absolutely correct Smile If the pain is truly nerve related, a diagnosis of vulvodynia will open up other treatment options with drugs like anticonvulsants and antidepressants.

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Re: Vulvodynia?

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