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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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free trial neogyn.us

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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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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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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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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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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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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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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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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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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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