Vulvodynia Support
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» Hope to all my suffering ladies
New member... so glad to find others like me!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New member... so glad to find others like me!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New member... so glad to find others like me!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New member... so glad to find others like me!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New member... so glad to find others like me!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New member... so glad to find others like me!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New member... so glad to find others like me!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New member... so glad to find others like me!! 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!
New member... so glad to find others like me!! 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


New member... so glad to find others like me!!

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New member... so glad to find others like me!! Empty New member... so glad to find others like me!!

Post  fairyemma1980 Sun Jan 08, 2012 5:35 pm

Hi I'm Emma, and I've just found this forum online. I'm 31 and been suffering from vulvodynia for about ten years now, but was only diagnosed about 8 months ago when I went to the doctor having discovered the info online and asked her if that was what I had. Over the years I've seen more specialists than I care to remember - about 5 different GPs, gyno at the hospital, GUM clinic, had keyhole surgery to test for endometriois, counselling, pyschotherapy etc. I now find it far too painful to have sex and to be honest the thought of sex terrifies me; plus I have very little libido left now anyway.
Over the years I've kept trying to get something to help me ease the pain but generally I find that doctors and specialists are either lacking in knowledge or are just not bothered.
When I found out about vulvodynia about a year and a half ago I spent months plucking up the courage to go back to the doctors and demand that they try to help me again. Since then I've gone onto 100mg of amitrypline a day but I don't really know if its helping that much. I've also been referred to a supposed 'vulval specialist' at my local hospital but she has been very negative so far and basically as good as said there's not much she can do. She is part of the dermatology dept. and has booked me in for patch testing in February, but to be honest I don't know whether its worth going. I'm already well aware of how lotions and potions affect me and only ever use acqueous cream to wash down there anyway.
I've also been referred to a physiotherapist in the gynocology dept at my local hospital and she seems to be the only ray of hope at the moment. Have already seen her twice in a month and she is the most positive person I've met in a long while - very patient and understanding. She is trying to train me to do pelvic floor exercises as my vulval pain has caused my pelvis to become very tight, which obviously affects any sexual contact I try to have.
I have been with my husband ever since my vulvodynia began, and we married in summer 2010, although we have not yet had sex as a married couple. I'd like to have a baby this year but I'm scared that a)I can't have sex to conceive and b) Delivery would be too painful. My husband is really understanding about it all but I always feel such a disappointment and worry constantly that he will go off with someone else to get what I cannot give him.
Is there anyone on this forum who has conceived and given birth whilst having vulvodynia? I'd really like to hear from you about the experience.
Thanks.

fairyemma1980

Posts : 3
Join date : 2012-01-08
Age : 43
Location : Sheffield UK

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New member... so glad to find others like me!! Empty Re: New member... so glad to find others like me!!

Post  Sarah001 Tue Jan 10, 2012 8:08 pm

Hi and welcome. I've also done the vulval specialist who's actually a vulval dermatologist route, mine was in charge of medication so it might be worth going back to get her to request your GP gives you something different. I'm also on Ami and it didn't help so I've had 450mg of Lyrica added which helps a bit. I've also just started with a positive physio but I have a very unstable pelvis along with my super tight pelvic floor so I have to start with exercises to stabilise that before we even look at the PF issues. Fingers crossed physio works for us!
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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