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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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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 …

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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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Diagnosed on Friday

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Diagnosed on Friday

Post  Sesquipedaisy on Mon Sep 12, 2016 2:54 pm

Hi, everyone,

I'm twenty-five years old, like to have fun but am very mature for my age (I'm two years out from getting my Ph.D.), and previously was very proud to just have non-monogamous casual sex relationships--but I suspect that last part will change now.

It's been a difficult summer. My first gynecologist had me on topical and oral diflucan for a yeast infection I didn't have and the antibiotics ampicillin, doxycycline, and ciprofloxacin for other infections I didn't have.

On Friday I got a second opinion and before looking at me the doctor said my symptoms didn't sound like an infection, and after performing the Q-tip test he said he thinks I have vulvar vestibulitis. He printed out a bunch of research, most of the 2000s, for me to look over and also a pamphlet for a support group. I've started on Montelukast (aka, singulair), which acts as a mast cell inhibitor.

After doing my own research, the description that fits best is secondary provoked vestibulodynia presenting with moderate erythema, dyspareunia, frequent urination, urgent urination, and a feeling of incomplete emptying with urination. In other words, I have had pain-free penetration, but sometimes penetration or contact with my genitals sets off a pain episode that results in a burning feeling, redness, swelling, painful penetration, and urinary symptoms.

I realized after getting the diagnose that the symptoms I'd been experiencing this summer, which I thought were an infection, were similar to symptoms I experienced last year. In 2015, after having sex that was too rough with a partner who was too big for too long, I was in pain for months and no doctor could figure out why. It eventually just went away on its own. I didn't notice that my pain episode this time began immediately after sex (I'd had sex in May and then my symptoms became apparent in June), but it does very much feel like the same thing all over again.

I want to get more tests done to rule out or confirm a hormonal imbalance (my symptoms get worse just before and at the beginning of my period) and interstitial cystitis (IC) (because of the urinary component). I recognize that I could have these issues in addition to vestibulodynia, as women who have it also frequently have at least one other chronic condition (comorbidity).

Regarding the treatment options my doctor suggestions, it looks like recent research has not confirmed their efficacy, but he said that I will be in charge of my treatment and appreciates that I do my own research into my conditions. I'm definitely open to surgery, although he views that as a last resort.

So I just wanted to introduce myself. I'm sure I'll be on here a lot.


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Re: Diagnosed on Friday

Post  emalita on Mon Sep 12, 2016 5:27 pm

Hi Sesquipedaisy!

I'm so sorry to hear that you're having to go through this, and I hope with time you are able to find lasting relief Very Happy


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Re: Diagnosed on Friday

Post  Sesquipedaisy on Mon Sep 12, 2016 8:18 pm

emalita wrote:Hi Sesquipedaisy!

I'm so sorry to hear that you're having to go through this, and I hope with time you are able to find lasting relief Very Happy

That will be the goal of treatment, but I know that this may last forever.

I've found that different people have different approaches to dealing with a diagnosis like this. When I entered my twenties, my mom was diagnosed with a rare chronic, degenerative neuromuscular disease, of which there are two types: one that can be cured and one that can't be.

Her doctor told her that she had the kind that couldn't be cured, and I drove with her to Mayo Clinic to get a second opinion. For a lot of the drive up there she was talking about how her doctor might not know what he was talking about and she had been praying to God about it and she believed that the doctors at Mayo would give her better news.

And the whole time I wished she would stop, because, like I said, I'd rather assume the worst and be surprised than hope for the best and be disappointed.

Mayo did indeed confirm that her disease is incurable, and I won't be surprised if my condition isn't either. And accepting that is part of how I cope.


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Re: Diagnosed on Friday

Post  emalita on Mon Sep 12, 2016 11:18 pm

I agree that sometimes assuming the worst is better than wishing for the best, but just know that with vulvovaginal issues beyond simple yeast and BV, doctors know VERY little. Most I've found are quick to blame the pain on overactive nerves, which, in my opinion, seems to be the knee jerk response of specialists who don't know how to look any further.

I've seen over 10 doctors for my pain, and I've had varying responses. Some were convinced it was a tough infection, some blamed nerves, some blamed imbalanced flora, some blamed lack of estrogen, etc. It's all a guessing game at this point, and I believe that's because the cause of vulvodynia varies as much as each individual woman.

Anyway, what I'm trying to say is don't give up all hope of being rid of your pain. Don't rely on a doctor to diagnose or heal you. If I would have, I wouldn't be making the huge improvements that I am today (no matter how slowly Wink ).


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Re: Diagnosed on Friday

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