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
Who is from London? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Who is from London? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Who is from London? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Who is from London? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Who is from London? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Who is from London? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Who is from London? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Who is from 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!
Who is from 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


Who is from London?

4 posters

Vulvodynia Support :: Announcements

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Post  mary jane Thu Oct 10, 2013 10:28 pm

Hello,

I will be going to a The London Vulval Pain Support Group meeting this Saturday, 12 October, at St Cyprian's Church .
If anyone is coming then, OR if anyone ever has the time to meet up, I am a friendly 26 yo student here and would much love to provide and receive some support !
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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Post  Mariahopes Mon Jan 27, 2014 12:30 pm

Hi Mary Jane,

I am not from London but am in London on Wednesdays and Fridays having physio if you would like to meet to off-load!

x

Mariahopes

Posts : 14
Join date : 2014-01-27

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Post  mary jane Mon Jan 27, 2014 5:27 pm

I'm free next Wednesday and Friday, love!
PM me with the time you're available, I live in central Smile

xxx
mary jane
mary jane

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Post  Mariahopes Mon Jan 27, 2014 5:31 pm

Well I'm in London this coming Wednesday for physio at 11 at Harley street! Are u able to meet then? I could meet u at say 12:15? Do u know marylebone high street?! Afraid I'm not familiar with London really! Xx

Mariahopes

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Post  Alana3 Mon Jan 27, 2014 5:45 pm

You guys suck I love london and its been a while! Hope you have a great meeting Smile say hi to Harrods for me Wink

Alana3

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Post  Mariahopes Mon Jan 27, 2014 6:01 pm

We will do Alana! Ur more than welcome to join us if u are free? Xx

Mariahopes

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Post  Alana3 Mon Jan 27, 2014 6:20 pm

Haha I live in florida otherwise I would!

Alana3

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Post  Mariahopes Mon Jan 27, 2014 6:22 pm

Oh sorry didn't realise- hope ur well at the moment xx

Mariahopes

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Post  Alana3 Mon Jan 27, 2014 6:47 pm

Nope you're all good. My vulvodynia is.cured but suffering from 3other problems which.arent so good. Have a great meeting tho at least that's one good thing this all brings us. Some friends Smile

Alana3

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Post  Mariahopes Mon Jan 27, 2014 6:57 pm

Really wow! How did u cure it? Sorry to her of your other problems. Yes I agree- thank god for meetings, forums, friends and family! Xxx

Mariahopes

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Post  Alana3 Mon Jan 27, 2014 7:18 pm

I had the surgery it's all gone Smile

Alana3

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Post  Mariahopes Mon Jan 27, 2014 7:47 pm

Brilliant hun! Fab news! Pretty sure mine is muscular... Having PT for 3 weeks and starting to notice improvements! Fingers crossed! Xx

Mariahopes

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Post  Alana3 Mon Jan 27, 2014 8:11 pm

Good! I did PT too after my surgery and it helped too

Alana3

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Post  mary jane Mon Jan 27, 2014 9:48 pm

I can't seem to be able to PM you, maria....
yes, this wednesday I can make it because that is EXACTLY where I live Smile harley st is a stone's throw away from me.

can you try and pm me your phone number? 12-ish is good for me !
mary jane
mary jane

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Post  zarli Mon Jan 27, 2014 10:54 pm

Oh I am sooooooooooo jealous you are meeting up !!!
Any one want to fly to Melbourne ??? haha
I would love to meet another woman with Vulvodynia or nerve pain. To think it takes 4 months to get into a vulva pain clinic in Melbourne must mean there is lots of other women in Melbourne that have V. May be I should walk around Melbourne with a sign around my neck !!! haha
Enjoy your catch up girls xx

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Post  mary jane Tue Jan 28, 2014 10:31 am

@ zarli it takes just as long here...2 to 3 months or even 6 months for the best urogyn specialist in the city!
I'm sure there are a lot of women in australia with this issue, it's just hard to organise meetings...the one I go to is like an AA type meeting, we meet in a church (in their basement)...it costs a bit of money...
the only place where I can think of which has australia ladies is here :
http://www.pudendalhope.info/forum/viewforum.php?f=30

perhaps you could try signing up ...


anyway, hope you have a nice week Smile
mary jane
mary jane

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