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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» 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

» 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 …

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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: 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). …

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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 …

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.

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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 …

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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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