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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 …

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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 …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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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 …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

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 …

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Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

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I want an exchange...my vagina doesn't work properly :(

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I want an exchange...my vagina doesn't work properly :(

Post  naomi on Fri Apr 09, 2010 11:40 pm

Wow I came across this website on the daily mail website.

Hello all!

Last year I wrote my story down on a site I found so I shall copy and paste the link now....

http://www.experienceproject.com/stories/Have-Vulvar-Vestibulitis-Syndrome/660437

I've seen 7 specialists, all privately to get to the bottom of this (excuse the pun) with no answers....just constant soreness daily. My vagina internally has acute inflammation and creates a hell of a lot of discomfort 24/7.

Sex is out of the question. I tried to test the waters recently with a vibrator...It bleed and I had no such luck. Sex is a distant memory and the thought of it just makes me shudder unforch' for my partner.

I lost my job in Jan this year and have been on employment support allowance. I had a medical assessment recently....I FAILED!!! (even though I took all of my paperwork with me from professors and consultants) So now I am having to appeal and go to an independent tribunal. It sucks. Id do anything to get back to a normal working life...like everyone else I know. DECISION TURNED ROUND AT TRIBUNAL 29/07/10 Smile Smile

It makes me feel so resentful towards people....friends, family. They are getting on with life and I am stuck in a constant nightmare. I am not a nasty person either so to feel these feelings just fills me with guilt.

I see a lady once a week privately, shes a pychiatrist/counsellor/something else I cant spell!....shes lovely and out of all the specialists I have seen across the UK she really does care about me. I was so anxious about my condition, I still am now and it has turned into clinical depression, horrible horrible horrible. I wish with all my heart it would disappear. Its such an isolating condition and it makes me lonely and feel like a freak...not a 'real' or /proper' woman.

Do folk like in the UK on this site???...Im based in Cheltenham, Gloucestershire. It would be lovely to meet up with people. I went to a Vulval Pain workshop in Shrewsbury last year, But everyone seemed to suffer with the stabbing pain type of vulvodynia. Mine is raw, inflammed and so so sore. More like Desquimative Inflammatory Vagintis....man I could retrain as a gynae after my years of research! so sad! Crying or Very sad

I am looking into trying Marjorie Crandalls theory about yeast spores burrowing into the vaginal/vulval walls...topical treatments do not reach the blighters there...hence no treatment that works. it needs to be through long term antifungal tablets and treatment through a 10 step programme. I started it last year but the UK medical profession do not agree with her theory. Also the antifungals caused such dry skin and half my hair fell out (luckily I had a thick mop of hair)

Well I am shattered so off to bed. I will write more v soon and waffle on again no doubt.

Hopefully speak to you soon people!

Naomi
xxxx


Last edited by naomi on Wed Aug 04, 2010 5:26 pm; edited 1 time in total
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Re: I want an exchange...my vagina doesn't work properly :(

Post  Sebby (Admin) on Sun Apr 11, 2010 12:30 pm

Hi Naomi,

Thank you so much for sharing your story, im 29 and have not been in a relationship for over a year now as the problems I have had with intercourse hurting just made me think whats the point. I too wish I can one day have a baby but it seems like such a distant dream and I can hear my biological clock ticking relentlessly!

I also had many years in my early 20's with what I thought was recurrent thrush, Im not really sure as I just used to get the symptoms buy the cream and it would clear up. I had been tested for STI's and came back negative. Then about a year and half ago It got worse and no antifungal medications worked, the dr tested me several times but I had no yeast infections.

After recurrent and then constant soreness, rawness, itching, burning you name it, I found out about Vulvodynia on the web. I find that my main symptom is a soreness and rawness around the vulva area and only get the stabbing pain sometimes.

I have been to gynea's, dermo's, gp's etc but most either said it was in my head or just didnt know what to do!

I have recently been seeing a gynea at my local hosp who is much more understanding and is trying me on the pill as I havnt taken it since I was a teenager and I also had problems with my periods.

I am finding a slight reduction in the pain but have only been on it for a month and a half. If this doesnt work then he will refer me to a specialist vulva clinic. He said there was one in the hospital. I didnt even know that! I dont know why they just didnt refer me there anyway!

Have you read Dr Glazer's book on Vulvodynia? there is lots of info on possible treatments. I live in the uk (London) and might try to find out if they have any bio-feedback practioners over here. I have thought I may as well try the bio-feedback, but I dont really know the cause of mine and if it does have anything to do with my pelvic floor muscles???

I have not heard about Majorie Crandell's theory I will look that up but I cant take the risk my my hair falling out its so fine anyway!!

Keep in touch and hopefully by sharing stories and treatments we can all begin to heal and build our lives up again.

Sebby (Admin)
xxx
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Are you sure of your diagnosis?

Post  Grace on Thu Jun 17, 2010 12:26 am

The symptoms you were describing sound a lot like what I suffered with for years before I got a true diagnosis of Vulvar Vestibulitis. Check this out on the internet and come back here to talk to me.

Grace

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Re: I want an exchange...my vagina doesn't work properly :(

Post  Sarah001 on Thu Jun 17, 2010 7:10 pm

Vulvar Vestibulitis is just a subset of vulvodynia though, it still only means "pain/inflammation in the vestibule" just as vulvodynia means "pain in the vulva", it's only a diagnosis of symptoms, it doesn't explain why it's there or how to get rid of it.
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Re: I want an exchange...my vagina doesn't work properly :(

Post  naomi on Sat Jun 19, 2010 8:54 pm

whatever I have...all I know is that its taken over my life. Taken my job, happiness and gradually cracking into my relationship. Why can these doctors take control and support me??? all the researching I have done myself. My parents hve spend 10k of their inheritance last yr alone...still no answers. And yet the medical profession just pass the buck on and on. It sucks. Please someone give me a hug too
Sad

I dont know how much more I can take I want my life back
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Re: I want an exchange...my vagina doesn't work properly :(

Post  tweety on Sun Jun 20, 2010 2:49 am

Hi Naomi,

Unfortunately, this is one of those medical problems that don't have a one simple cure... I don't think life is ever the same after you go through this. You can only hope that life gets better...

This is where focussing on on things that make you happy will somewhat balance out the rest of the unhapiness you feel. I know it's hard but I think that's the approach I'm going to have to take too. I've got to find something new that doesn't upset me. So what do you love doing that doesn't aggravate you too much?

*hugz*

Sue

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Re: I want an exchange...my vagina doesn't work properly :(

Post  Sarah001 on Sun Jun 20, 2010 11:34 am

Naomi have you had a biopsy done on your sore skin? The reason I ask is because in order to rule everything out if sore skin is present a referral to a vulvar dermatologist is necessary. As you're in the UK you can get this through the NHS but rather than ask a GP for it who will refer you to a dermatology department in general the best way to get to see one is to get another consultant to refer you. Consultants can refer you to a particular consultant and not just to a general department. I've got a referral to see one in August and I managed to get it by seeing a GU consultant. Any of the consultants you see can do this and the GU doctor I saw said it should always be a vulvar dermatologist rather than a general one as the general ones don't know enough about vulvar skin problems to be of help. There are several in the UK so there's bound to be one somewhere near you even if it's only once a month.

There are also vulvar clinics that we can go to, the nearest one to me is Sheffield apparently which is several hours away but the GU doctor said if dermatology didn't have any answers that's where I should try next as again they know things about vulvar problems that other doctors don't.
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Re: I want an exchange...my vagina doesn't work properly :(

Post  naomi on Tue Jun 22, 2010 5:56 pm

Hi tweety,

Sorry for late reply, sometimes I cant even get the laptop out as i get so low.... ridiculous!

I got a bunny rabbit last september (see profile pic!) a.k.a Bob. Reason being, my therapist asked me what makes me feel happy? I said animals and children, but it makes me sad seeing kids as it upsets me that i cant start a family.

So I got up a few mornings after my session and went and got Bob! Hes lush! Living back at my folks with me at the mo as I get so lonely and low at the place I rent.
The only thing is when Im as low as I have been this week I cant even get out and fed him, luckily my folks deal with all that. He spends 18 hours out of his hutch everyday and mooches round the garden and house...oh the life of a bunny rabbit!! He def does take my mind off things sometimes.

I miss swimming sooo much (chlorine makes me hit the roof and howl) but im hoping the sea water in turkey might soothe me....watch this space if you hear my howl from far away!

I started a pottery course in April and managed 3 sessions....now Ive missed so many i cant go back. waste of money but Its such a struggle to attend when I have no enthusiasm.

I do do painting though when I am feeling up to it...see my facebook albums!! I sell them too but thats on the back burner for the moment. I paint abstract art with glitters, glues, acrylic inks etc.


Sarah,

I had biopsies done last sept, internal ones, showed Acute Inflammatory Vaginits....aka....friggin sore La-la! different treatments that the professor of gynae didnt work. That is why he referred me to a hospital in Oxford. Now I am waiting til the end of July to have more biopsies taken (internal and external) but a new gynae. It is a joint clinic with a consultant dermatologist with an interest in vulval conditions, and a gynae. Hopefully they might come up with something. But from all my research over the months it appears to me it is Vulval vestibulitis, not that im an expert! Smile

Sorry if I dont reply straight away I really struggle with this at times, and this is one of them!

Hope everyone is ok

love Nai xxxxxxxxxxxxxxx

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Re: I want an exchange...my vagina doesn't work properly :(

Post  naomi on Tue Apr 21, 2015 11:50 pm

Gosh it's upsetting reading through my old posts
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Re: I want an exchange...my vagina doesn't work properly :(

Post  martinifaerie on Tue May 05, 2015 9:30 pm

How are you doing now Naomi? I have just read through all these and really feel for you and all you have been through. It has also made me realise mine could be so much worse. I dont get pain all the time, only through intercourse, but to me that is bad enough! I now see the other ways it can effect women and how it can really impact on daily life. I hope you have had some progress and feel a bit better in yourself. A place like this is so good to find other to chat to and see what works for everyone and opens up other options for you. I am still very new to the site so making my way around to see what its all about, but so far everyone seems so supportive and helpful. I already feel a little better about it knowing you are all here.
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Re: I want an exchange...my vagina doesn't work properly :(

Post  naomi on Sat May 09, 2015 7:24 pm

Hello! Yes I'm good thank you! No progression with my health stuff but I have recently started a more holistic approach to my condition. Healthy eating (until last night when I went to see The Prodigy in Cardiff and drank a vat load of red wine - man I was so ill!!). I have started taking supplements too and trying out guided meditation videos on YouTube
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Re: I want an exchange...my vagina doesn't work properly :(

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