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
surpport group in london EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
surpport group in london EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
surpport group in london EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
surpport group in london EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
surpport group in london EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
surpport group in london EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
surpport group in london EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
surpport group in london 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!
surpport group in london 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


surpport group in london

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Vulvodynia Support :: Support and Advice

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Post  maggie Fri May 18, 2012 2:21 pm

Hi girls, have been away from this forum for a while. Was wondering if any of you have been to the sorpport group that is held at St cypria's church near baker steet london. x

maggie

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Post  mary jane Sun Oct 20, 2013 10:52 pm

I've been on the 12th of October to that meeting, really amazing ladies. Next one is on 7th of December
mary jane
mary jane

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Join date : 2013-10-05
Location : UK

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Post  Sunflower82 Mon Nov 04, 2013 6:42 pm

Hi,
Wondering if anyone has an information on the support group in London? Wondering if you need to book a place ?

Thanks

Kt

Sunflower82

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Post  mary jane Mon Nov 04, 2013 6:45 pm

mary jane
mary jane

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Post  mary jane Mon Nov 04, 2013 6:46 pm

no need to book a place.
the meetings resemble AA type meetings and the girls are all lovely
mary jane
mary jane

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Post  Sunflower82 Mon Nov 04, 2013 9:04 pm

Thank you for the info Mary Jane.

Kt

Sunflower82

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Post  tinkerbelle2 Thu Nov 14, 2013 4:33 pm

Do you have to introduce yourself and talk? As that is my worst fear and idea of hell!!! Lol
tinkerbelle2
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Age : 31
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Post  mary jane Thu Nov 14, 2013 4:41 pm

@ tinkerbelle yes, but there is nothing to be scared about, really. and afterwards we go for tea.
and it helps to find out information about doctors, phisio therapists, symptoms, pills that work, etc
mary jane
mary jane

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Post  mary jane Thu Nov 14, 2013 4:41 pm

@ tinkerbelle if you ever come to london, I'm here Smile
mary jane
mary jane

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Post  mary jane Thu Nov 14, 2013 4:41 pm

and available for support
mary jane
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Post  tinkerbelle2 Sun Nov 17, 2013 9:36 pm

Maryjane that's so sweet and nice to know! Im here if you ever come down for a seaside break too!

The idea of the support group is great I just am so socially anxious. I used to have panic attacks when attempting to give presentations and stuff at college and I have to take betablockers before interviews otherwise I won't go lol! I have had counselling and cognitive therapy which were very good but I still get extremely nervous and worried about irrational things. But I'd love to meet a group of you im sure I'd be fine once I got there! Just a bit of a mess at the mo emotionally mentally and physically haha
Embarassed 
tinkerbelle2
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Post  mary jane Mon Nov 18, 2013 10:44 pm

Smile awww you sound like a shy flower tinkerbelle
mary jane
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