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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 …

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.

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My journey so far...

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My journey so far...

Post  xlmc89x on Sat Mar 24, 2012 8:45 pm

My pain started fairly young. As I began to go through puberty and start my menstrual cycle, I struggled because unlike my peers, I found myself unable to wear tampons. Summers were difficult, embarassing, and frustrating. But it was nothing compared to the battle I face now as an adult.

When I became sexually active I had a difficult time because penetration was excrutiatingly painful–even manual penetraton causes that burning, painful, itching, scratching feeling that I felt when I tried to use tampons. And sex obviously was no picnic.

I lost my virginity at age 18 to a boy who was comprable in size to myself– 5’3 95lbs– the pain was noticeable but not crippling. Because he was not the most well-endowed, I was able to have sex even through the pain. Although I never found it particularly enjoyable, I was able to do it. But after a few months of a not-so-great relationship, we broke up and I met the love of my life, John. And four years later John and I are still together against all odds. We connect emotionally and intellectually and every day I feel like the luckiest woman alive. But our sex life is difficult.

In 2008 I first started looking for answers. A gynecologist tested me for Endemitriosis through an exploratory Laproscopy and found nothing. So I was quickly back to square one. After searching and a lot of confusion, I explored treatment options for Vaginismus–believing that to be my condition. I used dialators and other techniques and still was left no closer to finding relief.

In 2010 I began seeing a specialist at Boston Medical Center who told me that without a doubt I had Vestibulitis. He tested my blood to see what was going on with me and discovered that I have extremely low levels of testosterone. So for over a year I have been taking a topical testosterone gel and using a numbing solution to try to have a normal sex life. (yeah right!) I cannot take any form of oral contraceptive either to make sure that my body is not overpowered by estrogen.

A month ago I went in for another follow-up appointment and laid down the line. I am still in pain. It has been over a year and the testosterone is not helping me. His offer to me was to perform a Vestibulectomy where he would basically remove the inflammed tissue. But I don’t want surgery. Not if it’s not necessary. I feel like there are more answers out there waiting for me and that it is my responsibility to take charge of my own life and explore other options.

I need answers. There has to be some reason I have this. If I get the surgery, won't the tissue just grow back still inflammed if I don't deal with what is CAUSING the problem? I need to know more about this condition and I am interested in learning what worked for others in my situation


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Post  xlmc89x on Thu Apr 19, 2012 8:42 pm

So, after my docotor (Ricardo Munnariz at Boston Medical Center) recommended the vestibulectomy I decided that instead of putting myself through that pain and time off of work I wanted to get a second opinion. So I made an appointment with the Women's Health Center at Harvard Vanguard in Burlington where Dr. Elizabeth Stewart works out of. My appointment was with Katherine Bell N.P. and I really liked her.

Thus far I've been taking Testim to build up my testosterone but my pain is still there and my drive hasn't increased either. But Dr. Bell did an exam and I held a mirror so I could see myself and she showed me that most of my skin was healthy except for a small area of inflammation. She prescribed Neurontin or Gabapentin at 100mgs increasing every 3 days till I hit 1000mgs where I will go in and reasses. She also wanted me to start physical therapy but unfortunately the wait list for that has me waiting until June so I am just going to work with dialators on my own. But she said the vestibulectomy surgery can often do more damage than good. And that it was unneccessary in my case.

Right now I feel like things are looking up and I'm really happy about it. I didn't want the surgery unless absolutely necessary and I'm so happy she didn't recommend that for me.

Anyone who lives in the New England area should seriously consider taking a trip to Burlington to see the Vulvovaginal Specialists there because they are amazing. I'll update with my progress!


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