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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


    What worked for me!

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    What worked for me!

    Post  katemate on Fri Nov 09, 2012 10:14 am

    I have posted the same thing on support and advice- I want as many people as possible to read my advice so I am posting it here too, I hope that is OK!

    Hi Ladies,

    I suffered with vulvodynia for at least a year before I found what worked for me and now I am pretty much painless. It is such a awful condition to have and I always note how grateful I am that I have basically cracked it.

    I posted on here a year or so ago and probably posted the same thing- but I wanted to post again to new members, or those that didn't try what I'm suggesting.

    OK so after various doctors, dermatologists, etc etc I decided to pay privately for a gynecologist in Sloane Square in London (super posh!) and he helped me LOADS. But I can pass this wisdom on for you guys, so the three things that helped me (and I think you need to do ALL of these- at the same time! however difficult at first they may be)

    *Take Amitryptiline- or other antidepressent prescribed for pain.
    *Wash everyday- with Vagisil
    *Use dialators

    Ok So i'll go into more detail below:

    Amitriptyline- now I was worried at first, taking an antidepressent for pain?! But it really does work. You have to start on a low dose and then build up (TALK to a doctor before obviously!) I had a few weeks of feeling tired and weird on them, then the body gets used to them and is FINE. I built up to take 75mg daily, and now I only take 50mg daily because I don't need any more than that! Sometimes it may take some trying of different antidepressents for one that works for you. amitriptyline for instance has been around for years.

    Wash Everyday- Very necessary, wash EVERYDAY with vagisil. NOT soap! Someone told me they wash down there three times a day with soap, no wonder they were uncomfortable! You have to clean the area everyday, and Vagisil is hypersensitive so I think the best one to go for.

    Dialators- this I think is the main thing that helped me. You need to put something in your vagina everyday- this is what my gynecologist told me. Now putting something up there can be the most daunting thing- when he told me this I literally gasped and reaaalllly didn't want to. But it is necessary, and now I am so so glad that I did because not only has it reduced pain, but it means that I can now have sex and am generally much more comfortable with that area. The ones I got are like these http://www.ennovations.co.uk/p/41/vaginal-dilator-set-femmax you can't see them there but basically there are different sizes, you start off on the smallest size, apply lubricant, and place in your vagina and rotate for 15 minutes each day, 2 weeks on one size, then you move up to the next size and do that 15 minutes a day for another 2 weeks. This is what I did. There are instructions with them so that will make it more clear what you do.

    Now everyone has slightly different cases of Vulvodynia, so these might not work for everyone, or people may need to do things differently with the dialators. But really these are the best ways of reducing pain and I think you should all try them (for at least a couple of weeks).

    I hope this advice helps you. Now I still occasionally get a little pain if I have my period, but barely at all- maybe 2 minutes of pain every 3 months!!! and I still can't ride a bike Sad BUT literally I went from pain every single day to nearly never. I hardly even think about my vulvodynia now and am so glad it is out of my life. I have accepted that I may have to be on the amitriptyline for a while, but it is such a low dose that it doesn't effect my life.

    Anyway, I hope you all try these things (at the same time!) and wish you all my wishes for your health. After going through Vulvodynia I do feel like a stronger person and am now proud of my vagina! Very Happy

    All the best,

    Kate

    katemate

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    Re: What worked for me!

    Post  jen007 on Sat Nov 10, 2012 3:59 am

    katemate,

    I'm new to the forum and just saw this post. I'm so happy to hear that amitryptiline as worked for you! I used to take it about maybe 9 or 10 months ago for vestibuldynia. It helped reduce the pain I had been experiencing, but unfortunately wasn't successful in the long run. I also had some weird side effects from it. For example, my doctor told me before I started taking it that it might make me gain a little weight. At the time I was about 115 lbs, so gaining a little weight didn't concern me. After about a month of taking amitryptiline I lost about 10 lbs. It totally curved my hunger and I was never hungry anymore. I'm still struggling to gain the weight back.

    I wonder if anyone else had has a similar situation happen to them?

    -Jen

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    Re: What worked for me!

    Post  katemate on Wed Dec 05, 2012 2:47 pm

    Hi Jen,

    I'm sorry to hear about your trouble with amitriptyline. It seems it doesn't agree with everyone, have you looked into trying other tricilic antidepressents? You might be able to find one that suits you.

    Also, have you used dialators?

    All the best,

    Kate

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    Re: What worked for me!

    Post  jen007 on Tue Dec 11, 2012 9:48 pm

    Katemate,

    Sorry I didn't respond sooner. I didn't see this until now Sad

    I never tried any other medications after that because I was worried about all of the side effects. I actually had a vestibulectomy this past July. It's really given me a lot of relief. I'm now using dilators, before surgery it was impossible.

    -Jen

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    Re: What worked for me!

    Post  mary jane on Sat Oct 05, 2013 11:02 pm

    thanks for sharing !
    I'll definitely look into this private clinic, I'm in London as well.
    But first i'll see a specialist at St Mary's
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    Re: What worked for me!

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