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    » It feels like I’m going to have pain forever
    Mon Jul 16, 2018 10:01 am by dunkelma

    » It feels like I’m going to have pain forever
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    » From a concerned husband
    Fri Jul 13, 2018 6:02 pm by emalita

    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


    Ever hopeful!

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    Ever hopeful!

    Post  CamperUK on Thu Feb 17, 2011 7:51 pm

    It was in the July of 2009 and that I first experienced discomfort during sex. I thought it would go away so ignored it for a while, but noticed a small lump. The doctor assured me it was a harmless cyst that would go away in time. Indeed it did but the pain did not. My doctor referred me to the Gynae Clinic where I was diagnosed with vulvodynia. Great, I thought, a diagnosis so the treatment can start straight away. But as we all know,there is no cure for this horrid condition. I did try Canesten cream but it made the condition much worse.

    My symptoms:
    Discomfort, sometimes intense.
    Constant burning sensation, this I can live with day to day, only during sex is it almost unbearable.
    Stinging sensation at the perineum.
    During sex the pain is similar to stabbing and burning.
    Treatments offered:
    Lidocaine. Does not help.
    Dilators. Have not even tried, seems futile?
    Self-help:
    I do not use any perfumed toiletries. Only Simple soap.
    White cotton undies from M & S. Laundered in Fairy non-bio on a hot wash. No fabric conditioner.
    Only use white toilet paper, not perfumed or patterned.
    I am already taking Fluoxetine (Prozac) which is a different kind of anti-depressant to the type sometimes offered to V sufferers and I dare not change as it works for me.
    Currently, I am using Vaseline but there is no change to my condition.

    I'm so pleased that I have found this forum to share experiences and hopefully mutual help and support. One thing I would really like to know is what happened to start my Vulvodynia off. Was it the menopause, the cyst, could it have been a minor trauma when I had a bikini wax? Off to read through the threads now and get some ideas to alleviate the discomfort until someone finds a miracle cure and we can all get on with our lives!

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    Re: Ever hopeful!

    Post  noni on Thu Feb 17, 2011 9:26 pm

    Hey! Smile

    Thats just it camper...WTF has caused this????

    For me...I speculate about several things...but really its important to see this in the big picture.

    My health has always been the weakest out of all my family...I was always getting sick, getting eczema, tonsilitis....you name it.

    I think this V stuff is one part derme, one part inflammatory, one part neurological. Its a combo of things and as a result a combo of treatments are required for this...in other words it requires a multi disciplinary appraoch.

    Thanks for sharing Smile

    You will find the support you need on here...
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    Re: Ever hopeful!

    Post  Sebby (Admin) on Thu Feb 17, 2011 9:50 pm

    Its really hard to pin point what causes it, I think a number of things contributed to my eventual full blown constant pain:

    Long term antibiotics - for acne for years when younger
    Senstive skin - in general any perfumed products in the bath over time set off pain and thrush infections.
    Tight pelvic area and Vaginismus - since I was 13 I couldnt even use tampons and I have always been tight - also a sexual assult at 15 made this a lot worse
    Ongoing back problems - it seems many women with vulval pain have back pain, I have had this since I was a child. Was even given an xray on my back but they couldnt find anything wrong?
    Nerves? - im unsure about the whole over active nerve firing thing which is why im testing this and have started taking pregabalin.

    Cor dear right now I really hate my vulvar! think i might exchange it for a chocolate orange Smile
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    Re: Ever hopeful!

    Post  noni on Thu Feb 17, 2011 10:28 pm

    Yeah Sebby...I think its a combo of things that set us up for this...Im sure sooner or later »I would have developed this...

    1. My Usage of antibiotics for tonsil issues
    2. Skin sensitivities
    3. Maybe some neurological issues?
    4. WTF who knows

    Problem is...we all need to act as our own docs!

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    Re: Ever hopeful!

    Post  Sebby (Admin) on Thu Feb 17, 2011 10:32 pm


    Well if we all dont get honorary doctorates in a few years time I will be mighty pissed!

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    Re: Ever hopeful!

    Post  noni on Thu Feb 17, 2011 10:34 pm

    Haha...I think were over qualified for doc status...we are specialists!
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    Re: Ever hopeful!

    Post  Mouse on Thu Feb 17, 2011 10:52 pm

    I think it's that bloody pudendal nerve then the muscles on the pelvic floor bunch up in reaction to perceived pain. Well for me anyway.

    Mine kicked off after surgery down there... hmmmm one year ago this week. What no champagne???

    All those anti depressents are to rewire the brains reaction to pain. Who knows maybe an electric current would work better.

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    Re: Ever hopeful!

    Post  CamperUK on Fri Feb 18, 2011 9:34 am

    Thanks all! Back pain, Sebby? I hurt my back a few years ago while moving furniture and get a flare up now and again (gardening usually sets it off) but I never made the link with V. Stress seems to make it worse or is it that when you feel stressed other feelings are heightened? Can someone find a cure please I would rather chat about chocolate oranges!!!

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    Re: Ever hopeful!

    Post  Sarah001 on Fri Feb 18, 2011 12:06 pm

    Hey Mouse snap, I'm also at my one year anniversary now. If someone had told me I'd still have the problem in a years time I'd never have believed them back then.
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    mmmm chocolate oranges

    Post  saskatownv on Fri Feb 18, 2011 4:27 pm

    All of my problems started after an abortion. I had never had any problems before then. First it was reccuring yeast infections for years, and finally when that was cured (by a naturopath I might add, not a gyno). I guess from all of the yeast infection creams etc. that I was using I was left with V.

    What I have learned. Never put any cream, steroids etc on your vulva without talking to someone first. I used tea tree oil as an anti fungal and it probably did a lot of damage to the nerve endings.

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    Re: Ever hopeful!

    Post  Mouse on Sat Feb 19, 2011 12:48 am

    Interesting you say that Sally, my physio was very keen to attribute mine to some trauma down there. I've had 3 fairly uneventful deliveries. She says the body remembers trauma. I did have some of that when I was younger and haven't had the courage to mention it yet. It's my aim to do it when I see her on Tuesday. I have my therapist Wednesday and she suggested I share... so I'm on a time limit with my homework :\


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    Re: Ever hopeful!

    Post  Sebby (Admin) on Sun Feb 20, 2011 1:19 pm


    Yes Camper I have always had a dodgy back and pain since I was a little girl. I remember when we would all sit in the TV roomm to watch crap the teachers thought was educational and I was probably the only 7-8 year old who had to sit up straight and think about my posture. My back would ache terribly.

    I used to pull the back muscles quite frequently too and be laid out on the sofa. Drs couldnt find a reason, did and x ray and said I was ok.

    I guess I just saw it as part of my life, had to be careful doing the garden, hoovering etc I put my back out hoovering loads of times!

    yes I really do think I need a physio! or a chocolate orange...either/or Laughing

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    Re: Ever hopeful!

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