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Tue Jul 26, 2016 2:04 pm by emalita

» Vulvodynia - Newly Diagnosed
Tue Jul 26, 2016 9:24 am by emtx

» Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?
Sun Jul 24, 2016 6:30 pm by emalita

I was diagnosed with Vulvodynia at 13 years old.

Wed Jul 06, 2016 8:29 am by spencerlily

My name is Spencer Lily Hastings, and I am 13 years old. I was diagnosed with Vulvodynia about 6 months ago, but have been feeling intense pain since I was about 9 or 10. My condition is pretty bad I suppose. I feel intense pain sometimes without even wearing tight under wear or pants. Mainly I feel pain when I wear shorts or pants with high seams, or any normal underwear. I am unable to wear …

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Surgery Failure :(

Thu Oct 24, 2013 10:35 pm by vetinprep

Hi
I joined this forum because I've been feeling really isolated and alone while slogging through a vestibulectomy recovery-hoping to talk to some people who understand!
I'm 28-I was diagnosed with vulvodynia and provoked vestibulitis last year-although I've probably had it forever I just hadn't tried intercourse before haha.
I ended up having a vestibulectomy exactly three months ago and I can't …

Comments: 14

13 years of vulvar pain, just starting to address it

Sun Jun 19, 2016 5:27 pm by NOluckduck

Hi everyone just thought I would introduce myself. I have read some of your stories and I can relate quite a lot - though I wouldn't wish this on anyone I am glad that I'm not alone, so thank you for posting. I live in Canada and was diagnosed with vulvar vestibuladyina this year. I have had vulvar pain since I was about 23 or 24 years old (I'm now 37). I first noticed it when I developed painful …

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Very very long introduction (new and miserable)

Wed May 25, 2016 6:45 am by Haze

Okay... I set out keep this as short as possible but boy, it's hard to condense 4+ years of pain. I've got an appointment tomorrow and am losing my mind. Any advice or ideas would be seriously appreciated if anybody can bear to read through.

Female, 25 years old, living the UK.

Pain begins January 2012, about an hour into intercourse with the SO. A "honey, I'm getting sore, can we take a …

Comments: 12

Has anyone tried this?

Sun Jun 05, 2016 12:42 am by MelisaD

I'm at the point where I'm getting pretty desperate. Has anyone tried this? Is it a scam?
http://www.emuaid.com/vulvodynia-solution?gclid=CN_bxqLTj80CFUlxvAodwYcOFw

Comments: 5

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 …

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What on earth is wrong with my hoo-hah?

Tue May 24, 2016 12:16 am by tensetensetense

Hi all
Will try to be brief. 40s female, 15 years married, childless by choice.  Sorry if TMI!

My entire life sex has been tight. Painful. I can't relax. Same with pelvic exams.  Tampons? Hell no.  No sexual trauma in my past and I am sex-positive, comfortable with my body.

My husband is normal size. Very patient.  The reason it has taken a back seat is that we have an otherwise nice …

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ALMOST CURED....

Fri May 20, 2016 2:22 pm by mac2011

Hi,

I've just joined today. I was finally diagnosed with Vulvodynia a few months back, after I'd had it for over a year. A year and a half later I feel I am 99% cured. I just want to say that it can get better because for long time I didn't believe that.

I sympathise with anyone going through this because it's hard to discuss with anyone as it's such a sensitive topic. These forums were the …

Comments: 2

My vulva feels bruised is this Volvodynia? Just started when I stopped Vagifem

Mon May 23, 2016 8:28 pm by emmasmudge

I have an appointment on June 3rd. I was on vagifem suppositories for vaginal dryness. Could not tolerate the vagifem as it was causing me serious itching in my bits. I stayed on it 5 weeks. As soon as I stopped taking it, my vulva became sore. Just on the lower right side (just outside the vaginal opening). It's been sore for 4 weeks. Seems a bit better than to start with. There is …

Comments: 3


Neogyn.us

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Neogyn.us

Post  florence1009 on Sun Jul 10, 2011 7:12 am

I am new here. Does anybody here about a novel cream called NEOGYN?
I am suffering vulvodynia since years and my OB suggested to try Neogyn... www.neogyn.us
They have a "try it for free" programm ongoing...So I will try it and let you know!!!

PS: They made a clinical study in Belgium with promising results: I found the results on vulvodyniatreatment.com

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Re: Neogyn.us

Post  Sebby (Admin) on Sun Jul 10, 2011 8:47 am


I have never heard of it. I am a bit skeptical of a cream that I couldnt get on prescription from my doctor and that is being sold for profit. Then again I really dont know if it works?

Before using it take the list of ingrediennts to your doctor and pharmicist to check it out

I am far to scared now to use anything but natural products such as coconut oil down there!

If it does help then deff let us know

Wishing you luck


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Neogyn ingredients

Post  florence1009 on Sun Jul 10, 2011 8:58 am

No parabens, no Propylen Glycol... I'll let you know. I just ordered a tube for free today. I am ready to try! Need something anyway!

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Re: Neogyn.us

Post  Sebby (Admin) on Sun Jul 10, 2011 9:02 am


I would be interested to know what the active ingredient/s are that make it soothing?

Yes let us know how it goes and good luck!

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neogyn test

Post  florence1009 on Thu Jul 14, 2011 4:23 pm

I received the tube (UPS shipped) without problems. Nice cream; I apllied it 3 times now just on my vestibule. i had a little tingling at the beginning. No tingling now. So far so good. They recommend to apply the cream twice a day for at least 6 weeks to realy feel the difference. I am trying to be patient.
The ingrediensts are interesting. They say it is a mix of some proteins and growth factors. They claim it makes the skin arround the vulva thicker...
I'll keep you posted! Smile

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neogyn.us

Post  ria on Thu Jul 14, 2011 7:09 pm



Please be careful there is alcohol in the ingredients. I hope it works, but I had a lot of problems with creams from the Doctors Trimovate, Yeast creams just made my Vulva skin red sore and swollen. I hope the cream works but so afraid of the pain and discomfort I went through at the beginning using all creams prescribed. Howard Glazer told me to put nothing on the vulva you could not eat olive oil natural products ect.........


Take Care
Ria

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Neogyn ingredients

Post  florence1009 on Thu Jul 14, 2011 7:31 pm

Where did you see there is alcool in it? There is nothing like this. So far I get absolutely no irritation of any kind! I asked my OB on ingredient ; he told NEOGYN seems pretty well done... did you visit neogyn.us?

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neogn.us

Post  ria on Thu Jul 14, 2011 7:48 pm



Perhaps I have got it wrong cetearyl alcohol? Is this ok. I really hope it works do you have Vulvodynia pain constant?

Sorry if I got this wrong


Hope it works

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Pain

Post  florence1009 on Thu Jul 14, 2011 8:08 pm

I have pain only during intercourse or when inserting a tampon... Really when I have some pressure down there.


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Re: Neogyn.us

Post  Sarah001 on Sat Jul 16, 2011 12:10 pm

Can anyone who has a tube of this post the ingredients please? I've looked and am interested but it doesn't sem to be available in the U.K, typical. Please can we have a list of ingredients?

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neogn.us

Post  ria on Sat Jul 16, 2011 2:54 pm



Hi Everyone,

I have sent for a free sample , go to website. Might as well get sample and do homework on ingredients. We need to know what is in it.

Take care all

Ria

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Neogyn results

Post  florence1009 on Fri Jul 29, 2011 6:34 am

Hello Girls!
Just a few words to let you know that I feel better! Smile I feel something is different down there:less tensed, clearly less sensitive...I keep applying my neogyn cream, and pray! I'll definitely keep you posted!

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neogyn.us

Post  ria on Sat Jul 30, 2011 12:16 am



Hi Ladies,

I have sent for my free sample cost £17.00 U P S delivery. Tomorrow I will write all info I have on it. Really scared to use it .


Keep you posted

Ria Smile

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neogyn.us

Post  ria on Sat Jul 30, 2011 12:17 am


Hi Ladies,

I have sent for my free sample cost £17.00 U P S delivery. Tomorrow I will write all info I have on it. Really scared to use it .


Keep you posted

Ria Smile

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neogyn ingedient

Post  florence1009 on Sat Jul 30, 2011 5:38 am

I checked on the ingredient; neogyn is a biotech product and contains proteins coming from "cultivated human fetal fibroblasts". I ask a friend who told me this is relatively conventional bio-technologies eventhough the fact of using anything with an "Fetal" origin is always hot material for the journalist! My friend told me that tipically most Polio vaccines are made the same way...
So if you reject sensionalism, it seems pretty solid science.

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Re: Neogyn.us

Post  Sebby (Admin) on Sat Jul 30, 2011 7:15 pm


Keep us posted on how you get on!

It scares me a bit about the fetal part to be honest :/

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Re: Neogyn.us

Post  Rose86 on Sat Jul 30, 2011 7:19 pm

Hey all,

It's certainly worth doing a bit of research into all the ingredients. Is it something that a person would need to use long term or is it something you can stop after your symptoms have improved? Just wondered if the study said anything about it. The website mentions a study in Switzerland, has anybody read this study? I'd also be interested to find out why it works. I'm not particularly keen on trying something if they can't explain why it works. However they also say Andrew Goldstein has just completed a study into this. His website says he is trialling the safety and effiacy of it for the treatment of Lichen sclerosus:

http://www.cvvd.org/research_studies

Obviously we need to wait for the results of this. But the fact that he's trialling it at all does make me lean towards the fact it is safe.

Let's investigate ladies!

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neogyn.us

Post  Caroline on Sun Jul 31, 2011 5:36 am

Hello!
I am Caroline. I do work for Neogyn in Switzerland. I am following blogs and Forums to give more information about our activities. So back to Rose86 questions...
"long term or is it something you can stop after your symptoms have improved?":
Usually it takes between 6 to 8 weeks to have symptoms significantly improved; which basically means to be able to go back to "normal" sex life. After that first period most patients "manage" their pain with the cream: some are reducing to once a day, twice a week, and some simply stops.
"How does it work": we believe the activity is linked to an increase of the dermal/epidermal thickness on the skin of the vestibule. But there may be other raison for activity: presence of many growth factors and IL1Ra in neogyn... Anyway, mechanism of action is very difficult to understands: Vulvodynia is probably not one disease but many different problems leading to the same symptoms ad neogyn contains a natural mix of proteins.
"Safety": I can confirm that on the about 300 registered cases in Switzerland, plus the cases of Dr. Donders Study in Belgium plus the 30 cases of Dr. Andrew Goldstein (this time on Lichen Scelorus) in Washington, we never had any kind of adverse effect. Neogyn safety profile is very good.
Additional information: Dr. Donders and Dr. Goldstein will both present their results in Paris (Sept. 5 to 9) during the next ISSVD. A new study involving 150 patients suffering Secondary Vulvodynia will be initiated in the USA starting September.
Please don't believe this is a miracle cream! Vulvodynia is a complexe condition and requires mostly a combined approach for a full treatment; but having said that Neogyn has been beneficial for hundreds of women so far and is definitely worth a trial.
Don't hesitate to ask any questions you want...
Enjoy your Sunday!

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Re: Neogyn.us

Post  Rose86 on Sun Jul 31, 2011 7:40 am

Thanks for your information Caroline. I don't think any of us expecting a miracle cream. Most of us have been let down by previous creams and are aware that what works for some women doesn't work for others, it is like you say a complex issue. However we do watch new treatments develop with interest. Usually we wouldn't like people posting from the companies who make the product. But as long as you are simply pointing us towards independently reviewed research then I can't see you doing any harm.

Are any of these results published in any journal articles anywhere yet? I would be interested in Dr. Goldstein's results - however I'm aware how long the process is from data analysis to published articles.

Also, you refer to it as vulvodynia - is this treatment specific to localised provoked vestibulodynia or has it been tested on the more generalised vulvodynia?

Thanks,

Rose86

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neogyn.us

Post  Caroline on Sun Jul 31, 2011 9:53 am

Studies completed in Switzerland and Belgium are on Localized Provoqued Vestibulodynia. see vulvodyniatreatment.com. The Dr. Donders study is currently under review for publication.
Results seems significantly better on women suffering "secondary" vestibulodynia.
Andrew Goldstein study focused on Lichen Sclerosus witch is a "different" animal.

NB: US physicians involved in our Scientific Advisory Board are Dr. Lara Burrows, Dr. Susan Kellogg, Dr. Andrew Golstein, Dr. Irwin Goldstein, Dr. Michael Krychman.

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neogn.us

Post  ria on Sun Jul 31, 2011 12:25 pm


I have unprovoked Vulvodynia, I have been using estradiol/emu oil from a compounding pharmacy. Does the Neogyn work in the same way Caroline? I have purchased the Neogyn and I have put a tiny amount on the Vulva, this is a big deal for me because I had been given so many different creams which made things worse.

At the moment seems ok. I will keep everyone posted I only put teeny weeny bit on so scared Rolling Eyes Rolling Eyes Rolling Eyes



Lets hope it works girls remember we are the experts, we can do our own trial Smile Smile Smile Smile Smile Smile


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neogyn on unprovocked vulvodynia

Post  florence1009 on Sun Aug 07, 2011 6:08 am

Ria;
No experience with "unprovocked" vulvodynia for what I know. But keep us posted! Don't forget to be patient: 2 times per day for at least 6 to 8 weeks. It takes time to initiate the creation of new dermal cells.
Good luck!

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neogyn.us

Post  ria on Sat Aug 13, 2011 9:13 pm

Well Hello Ladies,

I have been using the Neogyn Crean twice a day this is my third week and I think it may be helping. First and foremost no stinging or burning so I can tolerate the cream, I find I am walking better, no burning or irritation.


I am still taking Gabapentin and using Estradiol as well. Maybe I am having just a some good days you never know, but the cream is doing ok at the moment. I will keep you posted if there is any change.


Take care All xxx

Ria Smile Smile Smile Smile Smile Smile Smile


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Re: Neogyn.us

Post  Karen818 on Mon Jan 07, 2013 12:58 am

I have used Neogyn for 4 weeks now and I feel a dramatic difference I don't feel irritated down there anymore, no more burning, my skin feels more elastic.... And the best of all I have 95% pain free sex now only in 4 weeks! This is a very promising time for us women with vulvodynia because this is the first cream ever designed for that specific disorder, and it works!

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Re: Neogyn.us

Post  meelie on Tue Feb 19, 2013 12:55 am

Hey, this is great news for me as I just purchased some this past weekend. Got word today that it has been shipped. I am looking forward to trying it. I also am taking Neurontin and flexeril hoping to get my pelvic floor muscles to loosen up in case this is causing problems. Don't know, just that my gyn listened to me when I told her my theory. Had an accident 4/30/11 and broke my left pelvis and have been sitting on my right "cheek" for over a year, I think I've put my PF muscles in a tight wad or something. Anyway, we are going on this theory. As I said on a different titled thread here I quit taking the neurontin three days ago because I thought it was making my face beet red and peeling but after going without it for 2 days I couldn't stand it anymore and took one last night. Hasn't had time to get going good yet but hoping it will help again. Doesn't take all the feeling away but takes the edge off anyway. Anybody ever heard of a side effect like this with Neurontin?

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Re: Neogyn.us

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