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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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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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 …

Comments: 7

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 …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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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: 1

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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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.

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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!
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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

















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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.
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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<

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Re: free trial neogyn.us

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