Thu Aug 04, 2016 7:19 pm by CherryTree23
Mon Aug 01, 2016 11:50 am by HazelsMum
This morning my daughter was diagnosed with Vulvodynia. She has been suffering pain since she was 18months and it has taken over two years to get referred to a paediatrician who diagnosed her.
Her symptoms have been intense pain, normally at night. Now she is older she can tell us about it and she says she feels like her 'front bottom's is on fire. She is SO SO distressed when happens. …
Wed Aug 17, 2016 1:39 am by angelique2016
Thu Aug 18, 2016 6:51 pm by Ldc
Well, I think I can skip the emotional journey, as all of you know what it is like. I am 24 years old, apparently healthy, no UTIs in the past and a couple of yeast infections, but many years …
Thu Oct 24, 2013 10:35 pm by vetinprep
I joined this forum because I've been feeling really isolated and alone while slogging through a vestibulectomy recovery-hoping to talk to some people who understand!
I'm 28-I was diagnosed with vulvodynia and provoked vestibulitis last year-although I've probably had it forever I just hadn't tried intercourse before haha.
I ended up having a vestibulectomy exactly three months ago and I can't …
Tue Aug 16, 2016 2:33 pm by amy124
I'm 18 years old and I've been struggling with all sorts of bladder/vaginal …
Wed May 25, 2016 6:45 am by Haze
Female, 25 years old, living the UK.
Pain begins January 2012, about an hour into intercourse with the SO. A "honey, I'm getting sore, can we take a …
Sun Jun 19, 2016 5:27 pm by NOluckduck
Wed Jul 06, 2016 8:29 am by spencerlily
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
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
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!
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.........
So if you reject sensionalism, it seems pretty solid science.
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:
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!
- Posts : 51
Join date : 2011-06-23
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!
- Posts : 2
Join date : 2011-07-31
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?
- Posts : 51
Join date : 2011-06-23
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.
- Posts : 2
Join date : 2011-07-31
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
Lets hope it works girls remember we are the experts, we can do our own trial
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.
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
- Posts : 7
Join date : 2012-12-09
Age : 26
Location : Los Angeles, CA
- Posts : 135
Join date : 2013-01-09
Location : Barnesville, Ga