Vulvodynia Support
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» Hope to all my suffering ladies
Neogyn.us  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Neogyn.us  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Neogyn.us  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Neogyn.us  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Neogyn.us  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Neogyn.us  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Neogyn.us  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Neogyn.us  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Neogyn.us  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

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 …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Neogyn.us

+8
meelie
Karen818
Caroline
Rose86
Sarah001
ria
Sebby (Admin)
florence1009
12 posters

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Post  florence1009 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

florence1009

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Post  Sebby (Admin) 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

Sebby (Admin)
Sebby (Admin)
Admin

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https://vulvodyniasupport.forumotion.net

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Post  florence1009 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!

florence1009

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Post  Sebby (Admin) 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!
Sebby (Admin)
Sebby (Admin)
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Post  florence1009 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

florence1009

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Post  ria 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

ria

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Post  florence1009 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?

florence1009

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Post  ria 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

ria

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Post  florence1009 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.


florence1009

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Post  Sarah001 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?
Sarah001
Sarah001

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Post  ria 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

ria

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Post  florence1009 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!

florence1009

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Post  ria 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

ria

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Post  ria 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

ria

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Post  florence1009 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.

florence1009

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Post  Sebby (Admin) 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 :/
Sebby (Admin)
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Post  Rose86 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!

Rose86

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Post  Caroline 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!

Caroline

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Post  Rose86 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

Rose86

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Post  Caroline 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.

Caroline

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Post  ria 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


Ria

ria

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Post  florence1009 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!

florence1009

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Post  ria 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


ria

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Post  Karen818 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!

Karen818

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Post  meelie 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?

meelie

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