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» 7 months since the diagnosis
IMPORTANT FOR UK SUFFERERS EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
IMPORTANT FOR UK SUFFERERS EmptySat Jun 15, 2019 5:22 pm by mary jane

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

» Help New Diagnosis
IMPORTANT FOR UK SUFFERERS 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!
IMPORTANT FOR UK SUFFERERS EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
IMPORTANT FOR UK SUFFERERS EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
IMPORTANT FOR UK SUFFERERS EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
IMPORTANT FOR UK SUFFERERS EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
IMPORTANT FOR UK SUFFERERS EmptyMon Apr 08, 2019 7:54 am by Jo44

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


IMPORTANT FOR UK SUFFERERS

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IMPORTANT FOR UK SUFFERERS Empty IMPORTANT FOR UK SUFFERERS

Post  infinitelywondering on Sat Jan 21, 2017 11:26 pm

Hi everyone,

Today I was diagnosed with Vestibulitis. After being dismissed and ignored by numerous GPs and NHS gynaes, I finally visited Mrs Gabrielle Downey in Birmingham. Not only was her manner so reassuring and kind but she efficiently diagnosed me in the space of about ten minutes. She was as frustrated as we all are about the lack of understanding of vulval pain within the medical community.

She prescribed me diflucan to remove any sort of infection if it exists, tetracaine (a numbing gel) which was incredibly effective for day to day management and a steroid cream to use day and nightly. We have arranged for a vestibulectomy if these treatments show no improvement- I am feeling so much more positive and happy now Smile

Mrs Downey has immense knowledge about all sorts of different types of vulval pain and she assured me I will get better very soon Smile She is at the Edgebaston Hospital (private) in Birmingham and I would absolutely recommend if you are in the UK that you go and see her. Around 90% of the women that she has operated on have made a complete recovery after so there is definitely hope!

Please do not lose hope. It may sound stupid but positive energy is one of the best things possible when battling this awful condition; we will all get better one day Smile

Good Luck everyone x

infinitelywondering

Posts : 34
Join date : 2016-12-04

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Post  fairlight10 on Sun Jan 22, 2017 9:41 am

Thank you for posting this very useful information.I have made a note of her name etc. I think this lady was often on the tv programme Embarrassing Bodies.

fairlight10

Posts : 72
Join date : 2016-04-17

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Post  srbry on Sat Mar 03, 2018 2:29 pm

Thank you for this, I've read a bit about this woman and might try and get a referral down to see her if nothing comes of my appointments in the north of England. Glad to hear you've finally got your diagnosis. xxx

srbry

Posts : 14
Join date : 2018-03-03

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Post  HedvigB on Sun Nov 18, 2018 8:15 pm

Hi infinitelywondering

Any updates on your vulvodynia recovery? did the treatments help or did you have vestibulectomy in the end? I'm booked in for vestibulectomy in January and I don't really know what to expect...I'm freaking out. Would love to hear more about others experiences!

HedvigB

Posts : 4
Join date : 2018-07-02

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Post  srbry on Sun Nov 18, 2018 8:42 pm

I've private messaged you Smile

srbry

Posts : 14
Join date : 2018-03-03

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Post  mary jane on Sat Jun 15, 2019 5:21 pm

I looked up this gel (ametop gel) -tetracaine and it says online it is not to be applied on the genital area .. is it irritating or do you tolerate it well ?
thank you
mary jane
mary jane

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

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