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» Will there be an end?
Today at 12:06 am by Krista2828

» you can be healed so easy and quite fast.
Yesterday at 11:46 pm by pussycat

» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

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Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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 …

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Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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free trial neogyn.us

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free trial neogyn.us

Post  ria on Fri Aug 05, 2011 8:07 pm

Hi Ladies,

Well I have been using the Neogyn cream very small amount twice a day. I also use Estradiol with emu oil twice a day.


I have not had any reaction from the Neogyn, and it has been a week. I am going to keep using it to see if it helps I have unprovoked V.

Ria Smile Smile Smile Smile Smile


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heard about this

Post  Melissa777 on Fri Aug 05, 2011 8:48 pm

do you mean you have had no bad reaction? or no reaction at all?

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free trial neogyn.us

Post  ria on Fri Aug 05, 2011 9:16 pm

At the moment no difference no burning no stinging because of the cream. It might help if I give it more time several weeks I am prepared to try it. You never know it might help, God knows I have tried everything else.


Ria Smile Smile Smile Smile

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Re: free trial neogyn.us

Post  Rose86 on Sun Aug 07, 2011 2:51 pm

I have also received my free sample and am giving this a try. Only 3 days so far so obviously no change, but no reaction at all, no stinging or anything, so that's something.

I'll keep you posted.

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free trial neogyn.us

Post  ria on Sun Aug 07, 2011 3:53 pm



Hi Rose,

I think its worth doing our own trials with it and research. So far so good like you I feel no reaction good or bad. We have to give it time 6 to 8 weeks for the cells to start healing . What sort of V do you have? Mine is unprovocked so constant discomfort.

I also use Estradiol/Emu oil lets see how we get on with it.


Take carexx

Ria Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy

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Re: free trial neogyn.us

Post  Rose86 on Sun Aug 07, 2011 7:06 pm

Hi Ria,

Mine is provoked and localised to the vestibule. I don't for a minute expect this to be a cure, but any sort of improvement would make it worth it! That'll be more than I have had with any other treatment!

Good luck to us both!

Rose x

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free trial neogyn.us

Post  ria on Sun Aug 07, 2011 7:38 pm



Same here Rose I have tried everything so might as well give this a go. Its good that we can try it both having V in different ways. I have been putting a very small amount on twice a day. The postage from America to the UK was 17.OO U P S, so if it works it will be quite expensive but worth it in the long run.


Take care
xx

RIA Smile Smile Smile Smile

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Re: free trial neogyn.us

Post  Sarah001 on Mon Aug 08, 2011 11:57 am

Ria would you mind typing a list of the ingredients here please? I did ask a couple of ladies in another thread but the ingredients didn't appear. I know a pharmacist on another site I use who would translate them for us.
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Post  ria on Mon Aug 08, 2011 2:23 pm

Hi Sarah,



INGREDIENTS: WATER (Aqua), OCTYLDODECANOL,DECYL OLEATE, GLYCERTL STEARATE,PROPANEDIOL,GLYCERIN,STEARIC ACID,WHEAT GERM OIL, (TRITICUM VULGARE,CETEARRETH-20,CETYL ALCOHOL,BORAGESEED OIL (BORAGO OFFICINALIS),DIMRTHICONE,GLYCOSPHINGOLIPIDS,CUTANEOUS LYSATE, MYRETH-3,CETEARETH-12,TOCOPHERYL ACETATE,CETEARYL HOL,CETYL PALMITATE,CARBOMER,TRIETHANOLAMINE,BHT,DISODIUM EDTA,PHENOXYETHANOL,CAPRYLYL GLYCOL.



DOES NOT CONTAIN PARABENS, PROPLENE GLYCO,ANESTHETICS OR ANALGESICS.




Sarah so pissed off today with V you know when it just grates on you. I will be ok tomorrow just fed up with it. Sad RIA

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Post  Joolibee on Mon Aug 08, 2011 7:34 pm

Although I have had bad reactions to some creams, I decided to give NeoGyn a chance, as the supplier was willing to ship a free sample to Europe for $15. Cutaneous Lysate is described as the main active ingredient. Having had limited results from standard medications, I thought, well what harm can it do, other than increasing the pain for a while. Anyway, it arrived today, only a few days after being ordered. I was quite shocked when the delivery man asked for 33 euros import duty. Turns out to be a very expensive free trial. I've only used it once so far, but it did not cause any irritation and feels quite pleasant to use. I have secondary vestibulodynia, so perhaps this cream can help me. So far so good, but obviously I need to test it over a few weeks. I'm not expecting it to work miracles, but if it does provide sufficient relief for me to want to continue use, I am concerned that the cost of importing it from the USA will be prohibitive, particularly as it costs $49 per tube. This is particularly frustrating, since I am in France at the moment, pretty much next door to where the cream is made. It would be a shame if it turns out to be a useful treatment that is too costly for people outside the USA. I wonder whether there are any plans to make the product more easily available outside the USA. Question Question Question

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Re: free trial neogyn.us

Post  Sarah001 on Tue Aug 09, 2011 6:52 pm

Thanks for that Ria.

Joolibee that's precisely why I didn't dare order a free sample, I got stung with customs charges a few years back when I ordered something from the U.S and it actually cost me more in customs than the item so I'm very wary now. I think someone else said they ordered some from the U.K? If so were there any customs charges slapped on top?
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Post  ria on Tue Aug 09, 2011 7:35 pm


yes charges were 17.00 U.P.S. So its going to cost alot of money. We have to find out if the ingredients have any healing power. or is it just a cream that is safe to use on the vulva like vasaline. I am using it at the moment so we will see if there is any improvement over the 6 to 8 weeks, when we should see some improvement according to the lady who posted a reply.

Since I got V all I have done is spend money, its ridiculious the amount I have, spent.


Ria Smile

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Re: free trial neogyn.us

Post  Joolibee on Tue Aug 09, 2011 7:50 pm

I would imagine that import taxes would be similar throughout Europe, but I don't know. I understand the needs of commercial companies to make a profit and perhaps the manufacturer felt they would be better off selling the brand to a large country, such as USA. But it seems ridiculous that this cream is produced in Europe and then transported across the Atlantic, only for Europeans to be stung with import taxes to get it back across the pond. Apart from the environmental impact, it does make you wonder exactly how much they care about helping women. Rolling Eyes

I too have spent lots of money on trying to deal with this pain. I keep on thinking "well, I've spent so much already, what's another £20-30. But it all mounts up.

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Post  ria on Tue Aug 09, 2011 9:12 pm


Hey Girls, we would pay ANYTHING to get rid of this. I know all I want is for it to go away. Ok we can try the cream but I just feel they do not know what causes the V. There are so many variations on this condition but we ladies live with it and know how awful it is This condition drains the life out of you. I dont feel like the same person I was. I get sick to the back teeth looking for cures wondering if the pain is going to give me a break. If the cream works there will be a lorry load delivered to my house, they will have a sold out sign on the website Laughing Laughing Laughing Laughing Laughing Laughing Laughing


Rant over........

Ria Smile

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Post  Joolibee on Tue Aug 09, 2011 9:42 pm

I've just e-mailed the suppliers of NeoGyn and told them about the import duties. I've asked whether they plan to make the product more easily available outside the US and said that if not, I would not be able to afford to buy it. I just think it's absolutely scandalous, when the cream was developed and produced in Europe. I'll let you know if they reply. Mad

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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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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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