Vulvodynia Support
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» Hope to all my suffering ladies
Vulvodynia Treatment Registry - USA EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulvodynia Treatment Registry - USA EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulvodynia Treatment Registry - USA EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulvodynia Treatment Registry - USA EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Vulvodynia Treatment Registry - USA EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia Treatment Registry - USA EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia Treatment Registry - USA EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia Treatment Registry - USA 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!
Vulvodynia Treatment Registry - USA 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


Vulvodynia Treatment Registry - USA

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Vulvodynia Treatment Registry - USA Empty Vulvodynia Treatment Registry - USA

Post  Sebby (Admin) Mon Jun 20, 2011 9:34 pm


Vulvodynia Treatment Registry Enrolling in Six States

Arkansas, Colorado, Ohio, Florida, Maryland, Washington DC

NVA funded the creation of the first Vulvodynia Treatment Registry because it is unacceptable for women not to have scientific information on which to base their treatment choices. We've expanded the Registry project to seven enrollment sites in six states: Arkansas, Colorado, Florida, Ohio, Maryland and Washington DC.

In addition to generating vital data on which treatments are most effective for different vulvodynia subtypes, your participation will help Registry investigators identify factors that can predict treatment success and guide the development of large controlled trials of promising therapies.

If you are between the ages of 20 and 45 and suffer from vulvodynia, you may be eligible to participate in this study. (We've also obtained a grant that will enable Registry providers to begin enrolling women over age 45 in mid-late summer!) The study does not provide free medical care and treatment. Participation is voluntary, does not include any experimentation and will not change your treatment recommendation.

To read more about the Registry project, please visit NVA's web site.

To speak to a Registry coordinator about participating in the following states, contact:



Little Rock, Arkansas

Christina Hutchinson (501-686-6799, cmhutchison@uams.edu)



Los Angeles, California

Coming Soon



Denver, Colorado

Jill Zika (303-602-9069)



Orlando, Florida (2 sites)

Lilia Portilla (407-303-2721, lilia.portilla@flhosp.org)



Baltimore, Maryland

Gwen Monroe (443-632-0200)



Akron, Ohio

Sara-Jane Salstrom (330-375-4293, salstros@summahealth.org)



Washington DC

Hillary Tolson (202-887-0568)



Health care providers who would like to obtain Registry flyers to distribute to their patients should contact Ms. Portilla.



Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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