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    » It feels like I’m going to have pain forever
    Yesterday at 12:11 pm by mhhh

    » It feels like I’m going to have pain forever
    Yesterday at 10:01 am by dunkelma

    » It feels like I’m going to have pain forever
    Yesterday at 8:51 am by dunkelma

    » Honey decreased my pain considerably!
    Sun Jul 15, 2018 12:53 pm by mhhh

    » Birth control pills can cause vestibulitis
    Sun Jul 15, 2018 1:15 am by MDias

    » Gabapentin gel and pregnancy
    Sat Jul 14, 2018 4:15 pm by Georgie 121212

    » From a concerned husband
    Fri Jul 13, 2018 6:02 pm by emalita

    » I'M NEW - Do I listen to my gyno who I feel has it wrong?
    Fri Jul 13, 2018 2:58 pm by Gaby

    » Hi girls! New in this forum
    Fri Jul 13, 2018 2:31 pm by Gaby

    From a concerned husband

    Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

    Hello everyone,

    This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

    I’m sure a lot …

    Comments: 1

    I'M NEW - Do I listen to my gyno who I feel has it wrong?

    Fri Mar 09, 2018 6:17 pm by Tunes25

    Hello!

    I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

    To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

    Comments: 9

    Hi girls! New in this forum

    Fri Jul 13, 2018 2:31 pm by Gaby

    Hi everyone!

    Also joining the V club, Here my story:

    It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

    Comments: 0

    Newbie and feeling helpless

    Wed Jul 11, 2018 1:52 pm by Taylor1

    Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

    Comments: 1

    I'm new to this forum and would love some advice! :)

    Tue Jun 05, 2018 4:13 am by anikita

    Hi lovely gals!

    I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

    I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

    Comments: 5

    Gabapentin Gel. or other topical creams

    Thu May 10, 2018 9:43 am by Rosie21

    Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

    Comments: 1

    What has been helping ME (much less pain over time!!)

    Wed May 16, 2018 3:43 am by leoscc

    Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

    1. I …

    Comments: 0

    I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

    Mon Mar 12, 2018 4:33 pm by totallycured

    Hi,

    Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

    Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

    Comments: 4

    Condoms Less Painful?

    Mon May 07, 2018 3:35 am by stillinpain

    I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

    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

    jen007

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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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