Vulvodynia Support
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Vulvodynia Support

Does life feel like one huge pain in the Vulva??? I have created this forum so that women living with Vulvodynia (Vulva Pain) can have a place to share, chat and support each other.


The link to my research project is in the Announcements forum, please participate if you can!!
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» Hope to all my suffering ladies
Have created a secret facebook group!! Shhhh EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Have created a secret facebook group!! Shhhh EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Have created a secret facebook group!! Shhhh EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Have created a secret facebook group!! Shhhh EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Have created a secret facebook group!! Shhhh EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Have created a secret facebook group!! Shhhh EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Have created a secret facebook group!! Shhhh EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Have created a secret facebook group!! Shhhh 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!
Have created a secret facebook group!! Shhhh 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


Have created a secret facebook group!! Shhhh

+10
Char29
b3cka
ButterflyLiz
Kam10
Frustrated and had enough
tannya
mblack
Mouse
jules
Sebby (Admin)
14 posters

Vulvodynia Support :: Announcements

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Post  Sebby (Admin) Wed Dec 29, 2010 12:55 am

https://www.facebook.com/home.php?sk=group_142536492467765

Here is the facebook sister group to the forum.....join if you wana!!

Membership and posts are secret so nothing is posted on your profile

Sebby
xxx


Last edited by Sebby (Admin) on Sun Feb 27, 2011 12:23 am; edited 1 time in total
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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Post  Sebby (Admin) Wed Dec 29, 2010 1:17 am


Am being daft again!! looks like link is stupid lol and looks like I have to add you guys as friends in order to add you to the group so send me your email address and i'll add you to both

xxx
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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Post  jules Fri Dec 31, 2010 2:12 am

Thanks for do this!

jules

Posts : 225
Join date : 2010-03-17

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Post  Mouse Sat Jan 01, 2011 1:08 am

Have you joined yet Jules? Come on over to the dark side - so we can see your face!!!

BTW I'm Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  mblack Sun Feb 20, 2011 4:37 pm

Hi

How do I join the group?

Thanks

xx

mblack

Posts : 4
Join date : 2011-02-20

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Post  tannya Tue May 31, 2011 9:57 pm

I would like to join the group..

tannya

Posts : 4
Join date : 2011-05-18

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Post  Frustrated and had enough Sun Aug 21, 2011 9:16 am

Hi,

I'm new here and would like to join your facebook page!! How do I do this??

Frustrated and had enough

Posts : 3
Join date : 2011-08-21

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Post  Mouse Sun Aug 21, 2011 11:34 pm

See above - you email Sebby Very Happy

Mouse

Posts : 303
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Location : New Zealand

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Post  Kam10 Tue Jan 17, 2012 1:51 am

Is this by any chance The Vulvodynia Support Group on FB? I just joined that a second ago. I hope I found the right one!
Kam10
Kam10

Posts : 32
Join date : 2012-01-16

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Post  ButterflyLiz Tue Jan 17, 2012 6:57 pm

Hey hun, our group is called "Vulvodynia Support Facebook" & has the same photo as the one at the top of the forum, if that helps? You need to be added to it, so if you're not in the right one just PM Naomi xx
ButterflyLiz
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 38
Location : UK

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Post  Kam10 Tue Jan 17, 2012 11:12 pm

I think I joined a different one then. The picture for that group is a circle of people holding hands. I can't find your group when I do a search for vulvodynia support in Facebook.

ButterflyLiz wrote:Hey hun, our group is called "Vulvodynia Support Facebook" & has the same photo as the one at the top of the forum, if that helps? You need to be added to it, so if you're not in the right one just PM Naomi xx
Kam10
Kam10

Posts : 32
Join date : 2012-01-16

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Post  ButterflyLiz Wed Jan 18, 2012 5:44 pm

In that case I guess it's completely hidden until you're a member. You'll need to PM Naomi on here and ask her to add you.
ButterflyLiz
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 38
Location : UK

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Post  b3cka Fri Feb 24, 2012 10:11 pm

I would be interested in joining the facebook group, but i cant find it....

Many thanks

b3cka

Posts : 3
Join date : 2012-01-12

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Post  ButterflyLiz Sat Feb 25, 2012 11:21 am

Hiya, it's a secret group so it doesn't show up until you're a member. You'll need to PM Naomi on here and ask her to add you.
ButterflyLiz
ButterflyLiz

Posts : 137
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Age : 38
Location : UK

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Post  Char29 Fri Oct 05, 2012 2:04 am

please add me - charmaine livingstone

Char29

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Join date : 2012-10-05

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Post  nova_chek Fri Oct 05, 2012 1:39 pm

Please add me, when I click on the link or look up the name nothing comes up. On fb I'm on there as Nova Hancock Grilli. Thanks!

nova_chek

Posts : 12
Join date : 2012-09-29

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Post  ButterflyLiz Sun Oct 07, 2012 11:48 am

Hi ladies, just as a heads up, you are probably best off PM'ing Naomi as she tends to hang out more on the fb page than the forum and may not see the messages you've left here for a while. You can do so here - http://www.vulvodyniasupportforum.com/u18contact
ButterflyLiz
ButterflyLiz

Posts : 137
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Age : 38
Location : UK

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Post  Sparkle Fri Oct 03, 2014 1:33 pm

Hello all, I'm new here, this forum is a wonderful place to be for women like us, I've been reading over last few weeks and the support here is amazing! BUT I can't seem to access the "support and advice" section. I keep getting an error. Is it the same for everyone? I would really like to access this section.

Sebby, is this your site? I no this is an old post but wasn't sure where else to post about admin type stuff lol

Sparkle

Posts : 84
Join date : 2014-10-03

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Post  keepsmiling Sat Dec 13, 2014 3:58 pm

How do I join the group on Facebook? Please help!

keepsmiling

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Join date : 2014-12-13

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Post  Ellsbells Tue Jul 07, 2015 9:24 am

Is this still running? Can I still join

Ellsbells

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