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Hello I'm newly diagnosed too!

Sun May 01, 2016 5:54 pm by Annmaria

Hello everyone I am so happy to have found you!
I'm a 56 year old woman recently diagnosed although I suspect I have had this a long time but it has crept up on me.
I first noticed painful sex with a partner who lived away (about 4 years ago) and who I only saw about every month. I thought my problem was 'tightening' because I didn't have intercourse so frequently plus I was newly through the …

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NEW member - I want my life back

Thu Apr 21, 2016 8:35 am by LouR

Since before Christmas I have had problems and after antibiotics, OTC pessaries and everything else, last month the burning pain became so unbearable that all I could do was stay in bed.  I have been taking 25mg Amitriptyline now for 2 weeks, which I think has taken away the burning, but I still have constant soreness at the opening of my vagina.  I have an appointment with the Gynae on …

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Did your doctor tell you that the birth control pill caused it?

Sat Apr 23, 2016 12:29 am by orangelight

Hey Everyone,

I started having pain after taking yaz birth control pill for 5 months, that was 6 years ago. My doctor said Yaz was one of the worst offenders, and that the 'low estrogen' pills like it cause the most vestibulodynia. Apparently the estrogen in bcp is from horse urine and highly potent, and it shuts down your body's production of testosterone (by increasing sex hormone binding …

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Q Tip test was not painful /but stil DX with vulvodynia?

Thu Apr 21, 2016 9:51 pm by Castle16

I've been suffering for almost 6 months with burning - started out with frequency/UTI symptoms - so after months of constant burning (always worse with repeated UTI's) I was finally diagnosed a week ago with vulvodynia by they Gyno I went back to who I had initially seen last Dec 2015 - she diagnosed vaginal atrophy at that time - this time the opening to my vagina was very red - thus the …

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New here- my story

Wed Apr 20, 2016 6:25 pm by MelisaD

Hi all,

I'm 28, from Australia. I've been diagnosed with crappy condition for 5 years but I suspect I've been suffering for much longer. I'm too sure what triggered it in the beginning. When I was initially diagnosed it was a continuous pain, anything and everything would aggravate it, but after taking endep it reliever it to a point where only provoked pain through sex or examination.
I've been …

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New member introduction :)

Wed Apr 20, 2016 12:56 pm by gingercat2426

So... I guess everyone has their story but at the end of the day they all have something in common.
For me, it started in October 2012. I had been with my partner for about 18 months and all was going well I had just come back from a month long trip and I was so excited to see him again. But upon penetration it hurt, it had never hurt like that before.

For a while I thought maybe it was the …

Comments: 2

Sexual Positions

Mon Apr 04, 2016 4:59 pm by Samuella

Hello,

I have vulvodynia, with pain from 10 to 2 on the entrance to my vagina. I was wondering if anyone, with a similar problem as me, could give me advice on which sexual positions they have tried and which ones have either worked or failed miserably. I would love to be more intimate with my boyfriend, but it always seems to hurt. We have had a bit of success with what cosmopolitan calls …

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New Here -- this is my story

Mon Apr 04, 2016 10:45 pm by calidreaming999

Hi everyone,

I am 28 years old and have been suffering from what I think is vulvodynia for 7 years now. It's been a very challenging 7 years Sad Especially listening to all my friends have normal, fun and adventurous sex lives whereas I am too afraid to even have sex for the pain it will cause and all the emotional blocks I have up now. But let me start from the beginning.

When I was 21 years …

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New Here ~~~~

Mon Aug 04, 2014 5:07 am by daisiesfordays

Hi all,  I love you 
I'm new here!
I'm a junior in college and was recently diagnosed with VVS. I had been taking birth control for the past year and 2 months before getting diagnosed, since it was the only thing that worked for my skin. Of course, I'm one of those people who hates hates hates blood, so I would always skip the sugar pills and start a new pack.
I got a yeast infection once, and …

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free trial neogyn.us

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free trial neogyn.us

Post  Joolibee on Wed Aug 10, 2011 10:58 am

I have received an e-mail from the Chairman / CEO of Neogyn in Switzerland. He obviously thinks I am French and has written to me in French, so I have not yet managed to translate all of the message. However, the gist of it is that he doesn't understand why I was charged 33 euros. He calculates that the tax should have been 19% of the cost of the product, therefore the equivalent of $18.62. I don't know exactly how much that would be in euros, but it would certainly be much less than 33 euros. He has asked me to send him the tax documents.
He seems to be saying that it is not yet possible to register Neogyn in Europe, but I need time to translate the rest of the e-mail.
It would only be polite for me to reply in French, as I don't know how well he speaks English, so I will need to allow some time to construct my reply, as my French is far from fluent.
Anyway, I am heartened to have received such a prompt reply and from the CEO. It does at least indicate that they care about their customers.
I will keep you posted.

Joolibee

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Re: free trial neogyn.us

Post  Sarah001 on Wed Aug 10, 2011 11:20 am

Well that's good Joolibee, at least they bothered to reply. I'm in a situation where as much as I would agree with Ria that I would pay anything to have this gone it's really about what I can actually afford and taxes on top of the cream would make it completely out of my price range even if it's a wonder cream. Since I got V I've spent a fortune I couldn't really afford to on ointments, oils, supplements and physio, but my money was all eaten up previously trying to find someone to stabilise my pelvic joints so I haven't got any savings left after all that to draw on now. I'm not sure about the product too because anything in a cream base usually makes me alot worse so I'll just hang around awaiting results before I look at it again!

Sarah001

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hows it working so far

Post  Melissa777 on Fri Aug 19, 2011 10:12 pm

any noticeable improvements yet?

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free trial neogyn.us

Post  ria on Fri Aug 19, 2011 10:53 pm

Using the cream twice a day no stinging or burning with it. Did we find out what the ingredients are? I think we have to give it at least 8 weeks to see if any difference.


The money we have all payed out is so annoying,and all of us are still not getting the answers and help we need. I feel the ladies on here who have experince over the years with V like myself pretty much heal themselves with whatever we can.

You would die laughing if I told you some of the whacky things I have done to get rid of this.


So at the moment still using the cream, biofeedback, estradiol with emu oil, Gabapentin.

Take care all xx Smile

















ria

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Re: free trial neogyn.us

Post  Rose86 on Sun Aug 28, 2011 8:45 am

Hi!

I've been using the cream for 3 weeks now and I haven't noticed any difference yet. As for the actual cream, I wouldn't exactly say it's easily absorbed so it takes a while to rub it in, are you finding this? Not really a problem though, as long as i'm actually getting enough on there. So I haven't noticed any improvement yet, but I will try it for the full 8 weeks. I know it takes a while for the creation of new dermal cells, so i'm not writing it off. I'm not using any other treatments at the moment so if it works i'll be able to say it was the cream and not something else.

Hope it's going ok for you!

Rose x

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Re: free trial neogyn.us

Post  Sarah001 on Sun Aug 28, 2011 1:07 pm

Hi, just remembered about this thread! Embarassed The pharmacist I sent the list of ingredients to said it was fairly standard cosmetics cream kind of stuff except one or two which she would be careful with applying to a delicate area like the vulva, the main one that concerned her a bit was Ceteareth-12 which apparently makes it easier for the skin to absorb chemicals and there's speculation it might be linked to breast cancer but it hasn't been definitely proved without doubt. That's about all she said, she wasn't sure it would help with V but understood we all try anything we can and was interested in the outcome. So that didn't get me far! I might show the list to my sister-in-law who works in the cosmetic industry and see what she thinks. I'll get back to you all if I remember to do this! Embarassed

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Re: free trial neogyn.us

Post  Rose86 on Sun Aug 28, 2011 3:12 pm

Hi Sarah,

Yeah i've also checked the ingredients. They are all frequently used in cosmetics, apart from cutaneous lysate, which is a fairly new creation developed for wound healing. It's the ingredient that causes the creation of new dermal cells. As for Ceteareth-12, it is used in cosmetics too. With regard to the cancer link, so many things are that i'm not particularly concerned! I mean estrogen cream is too, and so many of us ladies on here use that! I'll keep you posted if there is or isn't an improvement after 8 weeks though.

x

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Re: free trial neogyn.us

Post  jules on Mon Sep 05, 2011 4:12 pm

Hey ladies, I haven't been on for a couple of months. I ordered the NeoGyn awhile back. I live in the US., so i only had to pay for shipping which was only 5.00 dollars. Like Sebby and probably most of you, i have spent tons of money on this damn disorder! I used this cream a few times and noticed an increase in burning. Anything that says "cream" is going to burn for those who have very sensitive skin on their vulva. I stopped using it immediately. I'll be interested to see if it helps any of you. Do any of you use Lidocaine 5% ointment? I just got a prescription for this. One of the expert docs believes that women w/ V should use the Lidocaine 5% every night before bed. it may break the cycle of pain. I can really only tolerate it twice a day. but, it completely erases the pain for a good 1-2 hours. ahhhh, relief! Good luck ladies, let me know how the NeoGyn works out. Sorry you had to pay so much for it!

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Re: free trial neogyn.us

Post  Rose86 on Mon Sep 05, 2011 5:53 pm

Hi Jules,

Yeah I have used the lidocaine 5% nightly as suggested in the research study that investigated it. Unfortunately, it didn't help me. It did numb things obviously, but then once it wore off it would be the same level of pain. The constant moist feeling at night made things a bit itchy during the daytime too! The research suggests using it every night for 7 weeks on a cotton ball, and also applying it liberally in the mornings I think. As I said I didn't notice a difference, but it may help you! Do you have generalised or localised V though? I have localised. I've been using the Neogyn for 4 weeks now and still no change. I haven't noticed any burning, but no improvement either. I'll keep going for the full 8 weeks though just in case it hasn't had time to take effect yet.

Rose x

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neogyn

Post  Melissa777 on Sun Oct 02, 2011 9:58 pm

so has anyone using neogyn notice any improvement or ill effects?

I only used it for a few weeks and noticed nothing at all

a few ladies on another msg board said neogyn irritated them

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neogyn trial

Post  florence1009 on Tue Oct 04, 2011 9:11 am

Neogyn changed my life! So I can understand it doesn't work for everybody but it really made a huge difference for me. Ria seemed also happy with it... And the clinical results are there: see vulvodyniatreatment.com! My OB told me they just started a huge multicentric study in the US and he seems comfortable with the potential results...
I also checked their Scientific Advisory Board on their web site neogyn.us: it is also very impressing.
finally have a look at the VNR on youtube where Dr. Goldstein speacks about vulvodynia and neogyn.
We have something there ladies! It seems also working on Lichen Scelorosus see: slideshare.net/Neogyn/goldstein-issvd-2011
Smile Smile Smile

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Re: free trial neogyn.us

Post  Rose86 on Tue Oct 04, 2011 9:50 am

Hi Melissa,

I've been using the cream for 8 weeks now. At the moment i'm having a slight flare up (due being just before my period and having recently started using dilators again), so I can't say whether there has been an improvement. I'll use it for another 4 weeks and see. It definitely hasn't been a cure. But looking at the study stats, no patients were cured by it, in fact although there was a statistically 'significant' improvement, it was minimal. I didn't have any irritation though, and if anything by using the cream 3 times a day i've become a lot more comfortable using my fingers in that area, so that can't be a bad thing. But the jury is still out as to whether there has been an improvement, but it definitely hasn't made anything worse.

Melissa, can I ask what other message board women are discussing neogyn on? I'd be interested to read others' experiences of it.

Thanks!

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Re: free trial neogyn.us

Post  Sarah001 on Tue Oct 04, 2011 6:43 pm

I'm glad you girls are keeping us updated about neogyn, I decided to give it a miss as like jules any cream seems to make me worse, I also thought somewhere it said neogyn was aimed at women with lichen sclerosus so it would help women whoes V is skin condition based but not those with other causes. Keep giving us the info girls.

Sarah001

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Re: free trial neogyn.us

Post  BpCookie on Tue Feb 07, 2012 4:18 pm

Hello Ladies, I bought a tube of Neogyn and used it twice a day for about 2 and a half months now but I have not seen any improvement. I also bought Emu oil and used that for over a month and that didnt help either. I dont want to discourage anyone. It may work for some ppl, which is great.

I have also used a number of different types of suppositories that were supposed to sooth the area and those failed. Tried Amatryptyline (sp) tablets and Gabbapentin tablets but they failed too. Was given Lidocaine ointment but that was another failure. Bought something called terrasil but it failed like the others. Then I started experimenting with every oil that I could think of but nothing seemed to help. Ive used Clobetasol for a year now and although I tell the Dr.s that its not working, they all insist that its the best thing for it. *rolling eyes*. All day and all night long I use A and D ointment and thats the only thing that keeps me from going absolutely crazy. Im still on the look out for that fix-it-all magic treatment. Good luck to you all and I hope you find relief soon.

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neogyn shipping

Post  vyoleta on Sun Jun 02, 2013 10:54 pm

Hy everyone,

I wish to buy neogyn cream and i saw on the website that they don't have shipping for Europe. Please do anyone knowa from where i can buy it?

i saw that some of you tried the neogyn cream and you are happy with it and i hope it will work for me to.... i have vulvodynia for 7 years a had a 4 years relationship which ended because of this probleme Crying or Very sad but i think you all know that.

i don't have the power to tell you how depressive i am because of vulvodynia i actually think sometimes that i will never get better:(. Still i want to try neogyn....maybe......i don't know.... i just hope

Please help me with an answer.
Big hugs for you all>Very Happy<

vyoleta

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Re: free trial neogyn.us

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