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    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: 4

    Newly diagnosed

    Tue Oct 10, 2017 8:37 pm by Brevispink

    Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

    Comments: 9

    Recent "Poke" Pain - So Confused/Losing My Mind

    Thu Oct 12, 2017 9:26 am by kelseybeth23

    Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

    Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

    Comments: 5

    Does anyone else experience this?

    Sat Oct 14, 2017 5:21 pm by Angelmegs

    Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

    Comments: 0

    Post Full Vestibulectomy - 5 Years Later - Please Read

    Tue May 02, 2017 6:18 pm by jen007

    Hi All,

    It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

    For 4 years post …

    Comments: 4

    Do you ever worry that you're making it up?

    Fri May 27, 2016 6:50 am by Lucci

    Hello,

    I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

    A few years into treatment, I had the diagnosis of PTSD added on for …

    Comments: 7

    Clitoris Issues

    Tue Apr 28, 2015 8:17 pm by January

    I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

    Comments: 2

    Cured of Vulvodynia

    Wed Aug 17, 2016 1:39 am by angelique2016

    I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

    Comments: 10

    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: 1


    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

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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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