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    » 7 months since the diagnosis
    Anyone else have burning on the front of thighs?  EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Anyone else have burning on the front of thighs?  EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Anyone else have burning on the front of thighs?  EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Anyone else have burning on the front of thighs?  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!
    Anyone else have burning on the front of thighs?  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    » Vestibulectomy next week in London!! - questions!!
    Anyone else have burning on the front of thighs?  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

    » Dating with Vulvodynia and Vaginismus advice
    Anyone else have burning on the front of thighs?  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

    » Research Participants Needed!
    Anyone else have burning on the front of thighs?  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

    » Does anyone else have Endometriosis?
    Anyone else have burning on the front of thighs?  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


    Anyone else have burning on the front of thighs?

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    Anyone else have burning on the front of thighs?  Empty Anyone else have burning on the front of thighs?

    Post  Hopeitworks on Sun Aug 13, 2017 2:20 am

    10 yrs ago when my vulvodynia first started I had intense burning skin sensations on the front of both thighs. It almost feels like sunburn. Over the years it's calmed down a lot and it only bothers me once in a while. Anyone ever feel this?

    My vulvodynia is unprovoked, but I had a Vestibelctomy and my V is doing great.

    I do think I have PN nerve damage.

    Thanks in advance for sharing!

    Hopeitworks

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    Join date : 2017-08-01
    Location : United States

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    Post  Zbrown on Wed Aug 30, 2017 10:10 pm

    I had the burning sensation also. I had it around inner highs, and right under my bum cheeks, also vulva area. I then seemed to get sciatica shortly after. My pain had got alot better but I still have bad days, I think mine is nerve related I had a fall on my bum/Tailbone and the next morning this occurred. Have you any suggestions how to manage the burning xx

    Zbrown

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    Post  Hopeitworks on Wed Aug 30, 2017 10:14 pm

    I'm going to a neurosurgeon tomorrow. I will let you know what I find out. What treatment he recommends etc;

    I have always believed my Vulvodynia is caused by some type of nerve damage.

    Hopeitworks

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    Post  mary jane on Thu Aug 31, 2017 8:01 pm

    Zbrown wrote:I had the burning sensation also. I had it around inner highs, and right under my bum cheeks, also vulva area. I then seemed to get sciatica shortly after. My pain had got alot better but I still have bad days, I think mine is nerve related I had a fall on my bum/Tailbone and the next morning this occurred. Have you any suggestions how to manage the burning xx


    With those symptoms it sounds as though you have pudendal neuralgia and not vulvodynia any longer. the same treatment applies and you can also get nerve blocks for it
    mary jane
    mary jane

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    Post  mary jane on Thu Aug 31, 2017 8:02 pm

    Hopeitworks wrote:I'm going to a neurosurgeon tomorrow. I will let you know what I find out. What treatment he recommends etc;

    I have always believed my Vulvodynia is caused by some type of nerve damage.  


    it's hard to prove it's nerve damage. I was able to come off my medication alltogether and had 1 year and 4 months of no symptoms. I basically had full remission. I doubt nerve damage would act that way as the moment you quit the medication you get the pain back ....
    mary jane
    mary jane

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    Post  mary jane on Thu Aug 31, 2017 8:03 pm

    Hopeitworks wrote:10 yrs ago when my vulvodynia first started I had intense burning skin sensations on the front of both thighs. It almost feels like sunburn. Over the years it's calmed down a lot and it only bothers me once in a while. Anyone ever feel this?

    My vulvodynia is unprovoked, but I had a Vestibelctomy and my V is doing great.

    I do think I have PN nerve damage.

    Thanks in advance for sharing!

    The pain in front of the thighs is just referred pain and not an evidence of nerve damage. when I saw my pain consultant 4 years ago she simply told me I have sensitized nerve endings from frequent bartholin cysts.
    mary jane
    mary jane

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    Post  Hopeitworks on Thu Aug 31, 2017 8:15 pm

    I have never had bartholin cyst. So what causes my referred pain? I'm just worried if I don't treat the nerve Vulvodynia will come back. I'm almost 5 weeks post op and V feels ok. A few flare ups with a little stinging but it doesn't last. I think I could live with the burning sensation on my thighs. But not if it cause v pain or clitoril pain.

    Hopeitworks

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    Post  mary jane on Thu Aug 31, 2017 8:19 pm

    Hopeitworks wrote:I have never had bartholin cyst. So what causes my referred pain? I'm just worried if I don't treat the nerve Vulvodynia will come back.  I'm almost 5 weeks post op and V feels ok. A few flare ups with a little stinging but it doesn't last. I think I could live with the burning sensation on my thighs. But not if it cause v pain or clitoril pain.


    https://www.physio-pedia.com/Referred_Pain



    Referred pain can be from any nerve irritation at one site, but because nerves "talk" to each other, you can feel pain at a site that seems to not have any connection to the original injury or irritation. for example I used to have coccyx pain and pain in my toes from V.

    5 weeks is very early however, so it actually sounds pretty good for the time being Smile

    i'm sure the referred pain you get will go away with time
    mary jane
    mary jane

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    Post  Hopeitworks on Thu Aug 31, 2017 8:25 pm

    Mary Jane I would love to pick your brain all day lol. Your full of knowledge! I love it! Thanks I'm just going to stop Googling it for now and hopefully that will ease my anxiety. The internet scared me by saying if nerve pain is NOT correct it could result in genital arousal syndrome! I don't want that!!!!! So I googled that and oh my it scared me because sometimes I get tingling on my clitoris for no reason. Doc said the tingling is from V. Maybe I'll go back on Gabapentin. Idk....

    Hopeitworks

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    Post  mary jane on Sat Sep 02, 2017 1:59 pm

    Hopeitworks wrote:Mary Jane I would love to pick your brain all day lol. Your full of knowledge! I love it! Thanks I'm just going to stop Googling it for now and hopefully that will ease my anxiety. The internet scared me by saying if nerve pain is NOT correct it could result in genital arousal syndrome! I don't want that!!!!! So I googled that and oh my it scared me because sometimes I get tingling on my clitoris for no reason. Doc said the tingling is from V. Maybe I'll go back on Gabapentin. Idk....

    Persistent genital arousal syndrome is incredibly rare, a lot more rare than V. I used to have buzzing and tingling everywhere as well !

    If this helps, you can try to start drinking valerian and sleepy tea Smile I found that this and magnesium helped me . anything that calms down the central nervous system will help and even eradicate nerve pain (alongside traditional treatment like medication or pelvic phisio)

    I've had remission and relapse from V by now so I've learned a lot by reading forums like neurotalk and ones on fibromyalgia. They seem to be related, fibro and V.
    mary jane
    mary jane

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    Post  Hopeitworks on Sat Sep 02, 2017 4:27 pm

    Mary jane,
    I probably overreacted and don't have presistent genital arousal. Especially since so many with V have tingling in clitoris. Thanks for your suggestions I'll try them.

    Hopeitworks

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