Vulvodynia Support
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» Hope to all my suffering ladies
If anyone has not yet joined the secret facebook page and would like to, here is the link! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
If anyone has not yet joined the secret facebook page and would like to, here is the link! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
If anyone has not yet joined the secret facebook page and would like to, here is the link! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
If anyone has not yet joined the secret facebook page and would like to, here is the link! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
If anyone has not yet joined the secret facebook page and would like to, here is the link! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
If anyone has not yet joined the secret facebook page and would like to, here is the link! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
If anyone has not yet joined the secret facebook page and would like to, here is the link! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
If anyone has not yet joined the secret facebook page and would like to, here is the link! 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!
If anyone has not yet joined the secret facebook page and would like to, here is the link! 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


If anyone has not yet joined the secret facebook page and would like to, here is the link!

4 posters

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If anyone has not yet joined the secret facebook page and would like to, here is the link! Empty If anyone has not yet joined the secret facebook page and would like to, here is the link!

Post  tinkerbelle2 Mon Aug 18, 2014 8:51 am

tinkerbelle2
tinkerbelle2

Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.

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If anyone has not yet joined the secret facebook page and would like to, here is the link! Empty U.K.

Post  tinkerbelle2 Mon Aug 18, 2014 8:57 am

And a specific group for those of you like me in England, ireland scotland and wales... https://www.facebook.com/groups/vulvodyniauk/?fref=ts
tinkerbelle2
tinkerbelle2

Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.

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Post  Nelliewelly Thu Aug 28, 2014 6:15 pm

tinkerbelle2 - I would like to join the specific UK group - just wanted to ask that this private and doesn't show up on my FB page? I'm not ashamed of my vulvodyina but it's not something I want to share with my FB pals!!
Thanks

Nelliewelly

Posts : 3
Join date : 2014-07-09

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Post  Chinchilla Thu Aug 28, 2014 8:28 pm

When I click the link, it takes me to a Vulvodynia Support group that says "Closed" not "Secret".
Chinchilla
Chinchilla

Posts : 24
Join date : 2010-03-16

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Post  sailor_moon Sat Aug 30, 2014 7:15 am

I would love to join the mainstream group but I am paranoid about the group showing up on my FB.
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Post  tinkerbelle2 Mon Oct 06, 2014 12:12 pm

Hey guys, I have asked a couple close friends and they can't see that I have liked or joined anything. It is invisible. Closed is basically secret I think. They would only possibly be able to see you were a member if they somehow accessed the link but that is very unlikely. Its totally whatever you feel comfortable with but i would definitely recommend it and say go for it, It is now more active than this site and has been extremely beneficial to me both emotionally and physically. Many of the tips i have tried from other girls are now things i use all the time
tinkerbelle2
tinkerbelle2

Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.

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If anyone has not yet joined the secret facebook page and would like to, here is the link! Empty Re: If anyone has not yet joined the secret facebook page and would like to, here is the link!

Post  Chinchilla Mon Oct 06, 2014 5:17 pm

This is what Facebook says about each of the 3 types of groups:

Who can join?
Public - Anyone can join or be added or invited by a member
Closed - Anyone can ask to join or be added or invited by a member
Secret - Anyone, but they have to be added or invited by a member

Who can see who's in the group?
Public - Anyone
Closed - Anyone
Secret - Only members

Who can see the group's name, description, and tags?
Public - Anyone
Closed - Anyone
Secret - Current and former members

Who can see what members post in the group?
Public - Anyone
Closed - Only members
Secret - Only members

Who can find the group in search?
Public - Anyone
Closed - Anyone
Secret - Only members

Who can see stories about the group on Facebook (like in News Feed and search)?
Public - Anyone
Closed - Anyone
Secret - Only members

Hopefully that helps any confusion and each person can decide for themselves whether they feel comfortable in the group! I love you
Chinchilla
Chinchilla

Posts : 24
Join date : 2010-03-16

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Post  tinkerbelle2 Tue Oct 07, 2014 11:37 am

Thanks chinchilla! That's great xx
tinkerbelle2
tinkerbelle2

Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.

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