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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


NEW YEAR, NEW DOCTOR, NEW OUTLOOK

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NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  shay on Sun Jan 09, 2011 12:11 am

I HAVE RECENTLY SEEN A DOCTOR WHOSE SEEMS TO HAVE THE CARING AND PATIENT PERSONALITY THAT I NEED RIGHT NOW AND SHE HAS STARTED ME ON ELAVIL AT NIGHT TIME AND A COMPOUND CREAM MADE UP OF NERVE BLOCKING, MOISTURIZING AND PAIN NUMBING MEDICATIONS ALL IN ONE CREAM.

SO IM HOPING FOR THE BEST...............

P.S HOW DO I FIND THE FACEBOOK PAGE THE ONE THATS PRIVATE

shay

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Mouse on Sun Jan 09, 2011 5:49 am

Hi Shay good luck with the new Doc, it sounds promising!

You need to send Sarah ie admin, your email address and she will add you Smile

Vicki

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nervous about side effects of ami

Post  shay on Sun Jan 09, 2011 7:50 pm

is it wierd for me to believe i will get better like im almost nervous to try this new treatment or maybe im afraid of it not working. Im seriously trying not to allowed my anxiety to overwhelm me because i believe that it is a mind over matter thing that requires faith.


idk.................. i started it last night and the cream didnt burn or irritate which is good and the little pill of ami only made me extremly sleep instantly and i know that weight gain is a side affect and i actually thought i can not gain weight however that quickly went out the window as a dumb moment lol like i would rather be 5000 pds and healthy versus my normal weight ( fingers crossed) .

is there any suggestion on how to keep the extra weight off

shay

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sebby (Admin) on Mon Jan 10, 2011 2:33 pm


Good luck with your new treatment Shay, I have messaged you back about the facebook group.

As for the weight, lots of exercise would be my advice..hard I know when you are dealing with pain. I find a good walk always does me good

I dont put weight on that easily cos I get anxiety and one of my symptoms is not eating much if Im anxious lol only good thing is I keep my figure but like you said I would rather put on a bit of weight and be healthy in mind and body

Take care
xx
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sarah001 on Mon Jan 10, 2011 7:49 pm

I've been on 50mg of Ami since August time last year and have put on about 6lbs. It slows your metabolism down and can also increase the appetite so not great! I haven't had any changes to my appetite but it's definitely done something so it must have slowed my metabolism down. It doesn't help that I can't do much though because of other problems so if you're able to exercise you may be able to avoid weight gain. Pay attention to what you eat while you're on it and you'll soon figure out if it's increased your appetite. For me it's been a disappointment because it hasn't got rid of the pain but I have to take it for Fibro so I get decent sleep.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  [Sara] on Tue Jan 11, 2011 4:34 am

I had a really bad reaction with Elavil and had to stop taking it within a few weeks. It actually made me extremely depressed and "robotic", and it really scared my husband. I mean I was already depressed having this condition but with the elavil I think it's safe to say it pushed me a little over the edge and I had suicidal thoughts and stuff.

But don't let that discourage you. I've read about plenty of women who did really well with it and it ended up helping their symptoms tremendously. I just don't think anti-depressants mix well with my body chemistry; I had a bad experience with them in high school when I went through a rough part of my past. Both times using anti-depressants I've had bad reactions. I did think it was odd that my gyno put me on anti-depressants for my hoo-ha, but she explained that it has been shown to help block the pain and relax the pelvic floor.

Hang in there. I pray that this is the answer for you! cheers

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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sarah001 on Tue Jan 11, 2011 1:26 pm

Ami is best at blocking pure burning, when I told my vulvar specialist it wasn't helping me much because most of my pain is rawness she said anticonvulsants such as Gapapentin and Pregabalin are better options because they're more sophisticated and deal with various types of pain so if the Ami doesn't work there are other options. Ami made me woozy to start with but you can't actually tell I'm on it anymore except I find it hard to wake up in the mornings.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

Post  Sebby (Admin) on Tue Jan 11, 2011 7:53 pm


Thats interesting most of my pain is rawness seems the anticonvulsants would be better suited.
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Re: NEW YEAR, NEW DOCTOR, NEW OUTLOOK

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