Vulvodynia Support
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» Hope to all my suffering ladies
Finally - the NHS have a page on vulvodynia! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Finally - the NHS have a page on vulvodynia! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Finally - the NHS have a page on vulvodynia! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Finally - the NHS have a page on vulvodynia! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Finally - the NHS have a page on vulvodynia! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Finally - the NHS have a page on vulvodynia! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Finally - the NHS have a page on vulvodynia! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Finally - the NHS have a page on vulvodynia! 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!
Finally - the NHS have a page on vulvodynia! 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


Finally - the NHS have a page on vulvodynia!

4 posters

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Finally - the NHS have a page on vulvodynia! Empty Finally - the NHS have a page on vulvodynia!

Post  ButterflyLiz Mon Jun 04, 2012 10:07 am

Sooo, it came to my attention last year that the NHS' online medical condition website, NHS Choices (www.nhs.uk ), did NOT have a page on vulvodynia. How could this be possible - I asked myself - when they have been treating me for it for 10 years!! I have regularly visited NHS choices / sister site NHS direct over the years to check out symptoms of various illnesses I've had and they have just about every conceivable condition on there...but nothing on v.

So I emailed them and asked them to put something up last December. They said they would. Come April - still nothing. So I mentioned it on the secret facebook group & several lovely ladies also wrote to them. Then come May - success!!! There is finally a page for vulvodynia! It's actually pretty good, too.

http://www.nhs.uk/conditions/vulvodynia/Pages/Introduction.aspx

I think this is a big step forward for several reasons:

1) Women who have vulval pain who have not yet worked up to going to see their doctor can get info from a reliable site on what the problem might be - leading to less confusion & fear about symptoms & the condition in general.

2) It will be harder for anyone to tell women this condition doesn't exist / it's all in their heads. Especially NHS practitioners - this page can be printed out & taken to appointments with clueless doctors.

3) It should help to raise awareness of this condition generally - it would have been pretty hard to convince people this is a common, serious condition when our national health service didn't even have public info about it.
ButterflyLiz
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Post  londonlady Mon Jun 11, 2012 9:01 pm

that is a great thing to do - well done!


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Post  Sebby (Admin) Sat Jul 07, 2012 10:31 pm


Thats Amazing well done! Smile
Sebby (Admin)
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https://vulvodyniasupport.forumotion.net

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Post  tinkerbelle2 Wed Dec 11, 2013 5:24 pm

Liz, that is amazing! It is that very page that actually made me feel I perhaps wasn't crazy! We've got to spread the word about this horrible condition
tinkerbelle2
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