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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0


Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

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Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

Post  BpCookie on Thu Mar 02, 2017 3:43 pm

Hello all my darling ladies, I was diagnosed with Vulva Lichen Simplex Chronicus over 5 yrs ago (I don't even keep count anymore). I was told that there was no cure for VLSC but it could be treated. All the treatments failed and year after year my pain got worse. I was stuck in bed most of the time, crying and just wanting to die. The burning pain was constant, I walked like I had just gotten off a horse because even my thighs rubbing together caused pain, I had to sleep lying on my back with my legs spread apart and I was constantly sitting on an ice pack. After years of failed treatments, appointments with different Dr.s and never ending research, I ran across a gynecologist who specialized in.........everything to do with the vagina. He wasn't afraid to treat my VLSC aggressively and he wasted no time in doing so. He did two surgeries, one was to clear out the Hymen Crucibles and the second surgery was to remove skin from the areas that were the most painful. Then he did painful alcohol injections to deaden the nerve endings and the last things he did was to put me on Lyrica. OMG!!! Girls, I feel like a normal woman now. I still have pain and I still have to take Lyrica twice a day but my pain has been cut down by 75%. Some days I don't have pain at all. Also, the last test they did came back NORMAL. My VLSC was GONE. I am now left with Vulvodynia but I can live with that since my pain level is so low now. I can even have sex now. I rub on some Lidocaine 5% which numbs the area and then I inject some KY Jelly into the vagina using a syringe to make sure I am good and lubed and *walla* I can have sex. My life is back girl!!!

My advice to you is to due research, never stop trying to find a Dr. who can help you, trust me, there is one out there some where you just have to them and try every treatment thats thrown at you.

You may want to try Lyrica and Lidocaine 5% ointment.

I wish you all the very best luck. Hang in there.

hugs
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Re: Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

Post  mary jane on Tue Apr 25, 2017 3:13 pm

Amazing, happy for you !!!!
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Doctor's Name

Post  amyhp on Tue May 02, 2017 3:44 pm

Bpcookie,

Could you PM me the name of the doctor that did the alcohol injections to deaden the nerve endings?

Thanks,
Amy

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Re: Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

Post  sj17 on Tue May 16, 2017 4:07 pm

Same for me.thanks

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Re: Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

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