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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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 …

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 …

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). …

Comments: 0

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.

Comments: 2

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 …

Comments: 0


The saga continues...

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The saga continues...

Post  noni on Thu Feb 17, 2011 9:50 pm

My derme appointment today:

Go in, im anxious....doc asks about my problem...I tell him. I put on that sheet thingy...another nurse comes in...he takes a look...asks where it hurts...I show him...they both say I look quote normal down there.

...this is doc number 6 or 7...Im not sure anymore...anyways after the usual awkward exam...

i tell him im on elavil...he tells me to continue taking it...I ask about topical options he says they are quote useless.

Then...I havent heard this one yet...and Im not attacking him...but he says that a good percentage of women who get Vulvodynia are actually depressed prior to getting it...He said that some people with this depresso/nerve predisposition get migraines, ulcers...or some of us vulvodynia.

Anyways...interesting theory....thoughts anyone?


Not really sure what the point of me posting this was...I guess share your story time?

Anyways...b;ah blah blah

Take care guys. Smile

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Re: The saga continues...

Post  Sarah001 on Thu Feb 17, 2011 9:57 pm

Hi noni, I can tell you that Dr Glazer has done research and found depression/anxiety/other mental issues are not the cause of vulvodynia and tend to occur as a result of it. That's just lazy doctors finding a polite way of telling us it's all in our minds which it's not. Bloody useless doctors. If depression was the cause then couselling or psychotherapy would alleviate the problem and again Dr Glazer did an experiment where one group of women went for "talk therapy" and it didn't alter their vulvar pain one bit. Google him and read his papers.
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Re: The saga continues...

Post  Sebby (Admin) on Thu Feb 17, 2011 10:02 pm

Hmmm im wondering where he got this theory from cos it sure aint in any vulvodynia literature I have read!

In the Vulvodynia Survival Guide book they did a survey (online) of many women and found that there was no link between any mental health issues and the onset of Vulvodynia

And I have not read anything else that disputes this research

I would beware that this is a typical way of telling a patient (its all in there heads!)

One Gynea told me it was all to do with anxiety. I told her that although this can make a condition worse that the research I had read did not support this. She then went on to tell me that many women are given antidepressants to help with vulval pain (this was her way of supporting her mental health theory) I had to remind her that acutally certain meds like ami acutally had an effect on nerve firing and this was way they were prescribed.





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Re: The saga continues...

Post  Sebby (Admin) on Thu Feb 17, 2011 10:03 pm


lol Sarah that was exactly the research I was talking about!

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Re: The saga continues...

Post  noni on Thu Feb 17, 2011 10:09 pm

Thanks for the feedback ladies.

I know, I know...I have been told before point blank its all in my head...this doc wasnt as direct, maybe?? I dunno....he wasnt rude when he said it...but whatever, another fruitless appointment...missed work because of it, etc, etc.

Im really at my wits end...


Is my pain dermatological, neurological...what is it??? Was it the antibiotics I was on before???


WTF!!!!!

Do I have some mutant fungus up my hoo-haa???

WTF!!!
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Re: The saga continues...

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

Hi Noni, this kind of shit makes me fucken angry. What a lazy bastard!

Could you print out some info and send it to the wanker so the next person through the door doesn't have to pay for that sterling advice.

I don't have depression. Nearly went there after the V show started though. It's frightening that these people are being believed.... by less cynical people than us.

Have you tried the yeast diet Noni? If that's part of your problem you should starve the sucker. There's a woman on the other V FB page who cured herself through diet modification she says she can eat what she wants now. So it's not forever.

Virtual punch in the face for that wanker!

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Re: The saga continues...

Post  noni on Thu Feb 17, 2011 10:22 pm

I just dont know anymore...

Are there any answers out there?

Im sick of being dismissed all the time...getting no help.

Oh...PS: This nurse recommended baths...hahaha. (we have all heard this) but not sitz baths...but instead tea baths...omg.

I would have stuck a tea bag up my hoo ha ages ago....
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Re: The saga continues...

Post  Sebby (Admin) on Thu Feb 17, 2011 10:23 pm

I did that! I photocopied Glazer's research and highlighted the relevant bits in bright yellow and sent it to that stupid gynae!
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Re: The saga continues...

Post  Mouse on Thu Feb 17, 2011 10:35 pm

There you go!!! Do it!!!

You know I have CD. Well my big girl in London is being tested at the moment, it is hereditary. She knows from the info I've sent her they have ordered the wrong blood tests. There is a Dr here named Rodney Ford who says it's our responsibility to educate the medical profession. Just keep at them until they catch up. They can't know everything. Even my GP says I know more about CD than she does. We have a vested interest to find answers. They are pill pushers. They reason CD is not a priority and massively underdiagnosed (average is 13 years) is there is no money to be made, no drugs to push.

Noni, I'm making my own way with this. I've given up with the specialist. I can't see the point in going back. I'm trying a more holistic approach to heal my body. Some days I'm committed and other days I should be committed but I want control. Ummm this is why I struggled with the drugs, the brain wouldn't give in :\ Anyway I've been smiling lately (yes I know Cat Stevens) I have no idea why. Something is working.

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Re: The saga continues...

Post  noni on Thu Feb 17, 2011 10:42 pm

Thanks for the support ladies

So much appreciated.

I know that I cant put all my hopes in a specialist...its up to me...its my body...problem is I dunno how to fix this.

Its so stressful some days....
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Re: The saga continues...

Post  Mouse on Thu Feb 17, 2011 11:03 pm

Ok just start with simple things... read every packet and be aware of every chemical that passes your lips. Eat naturally and drink loads of water. Aim for quality sleep so have a night time routine where you wind down, make your bedroom a comfortable haven. Stay away from bright light, that kills the melatonin you need to nod off. Breath deeply and nourish your body. Concentrate on the breath in and the breath out, it's hard to think of anything negative while you do this. If thoughts creep in acknowledge them and let them go. Oww try this one.. breath in and on the out breath smile. I can't even think about that without smiling.

Take time for yourself and do something you enjoy every day. Smile at people, they will either run in fright or smile back. That alone can be empowering, you might be the only person that smiles at that person for the whole day and they might pay it forward. Ok I'm not about to break into song and dance around the fire but you get my drift. If you make your mind stronger hopefully it will make you strong enough to cope and have the energy to hunt down the answer. It's a work in progress. Be kind to yourself.


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Calm is key, but venting is great!

Post  saskatownv on Fri Feb 18, 2011 4:44 pm

Fuck that guy! what an ass! Ive come across some lovely Drs in my time with this.

Even my own Aunt who in a gyno in a different country had the guts to tell my father that it was all in my head! I sent him that article from the Globe and Mail that was posted here. I told him to send it to her. He didnt have the balls, but now he doesnt listen to her anymore. Thank God!

Keep on truckin with trying to find answers! It is up to us as individuals I know. The sooner you realize that........well.......the less depressed you get after each Drs visit!

Good luck!
Sally

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Re: The saga continues...

Post  CamperUK on Fri Feb 18, 2011 6:30 pm

Mouse wrote:Take time for yourself and do something you enjoy every day. Smile at people, they will either run in fright or smile back. That alone can be empowering, you might be the only person that smiles at that person for the whole day and they might pay it forward. Ok I'm not about to break into song and dance around the fire but you get my drift. If you make your mind stronger hopefully it will make you strong enough to cope and have the energy to hunt down the answer. It's a work in progress. Be kind to yourself.


I like this thought process and admire your outlook.
Loving your work, Mouse! Camper x

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Re: The saga continues...

Post  noni on Sat Feb 19, 2011 12:02 am

Thanks so much ladies

...today...after the elavil wore off...i started to think...yeah this doc totally insinuated that Im a huge depresso!!!

WTF!
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Re: The saga continues...

Post  Mouse on Sat Feb 19, 2011 12:37 am

Noni, Sally is right, he is a fucker!

Thanks Miss camper, I'm trying for a new zen me. Instead of a crazed booze hag... I can't drink much these days it always leads to trouble.

Sally, do you have trouble letting go of what your Aunt said? It's harsh when someone in your own family is that unhelpful. I still feel the need to educate every stupid person I've come across. My brain is saying "let it go woman". One thing I have learned in this process is that some Drs are just too lazy or stupid to keep up with the research which makes them dangerous. I think it probably is up to us. My specialist suggested the low oxalate diet so I researched and asked her if I should get tested to see if that is a problem first... she replied there is no test... well yes there is, there would be a high concentration of oxalate crystal in my pee. I'm not taking on any more dietary restrictions than I already have at the moment. She is one of the good guys however so I'm not holding that against her. My original gynaecologist on the other hand has no idea what vulvodynia is, WTF??? Mine triggered after surgery that she performed and she said she had done bigger surgeries without that result and generally just ignored the problem while I went to crzy town ggrrrr. I sent her loads of research which she ignored as well. I have a lot of trouble accepting that it wouldn't make them the least bit curious and open a bloody book. hahhaaa that's me on my soapbox for the afternoon.

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Re: The saga continues...

Post  noni on Sat Feb 19, 2011 12:58 pm

yea...it really does seem its all up to us.
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Re: The saga continues...

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