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    » 7 months since the diagnosis
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! 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!
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    » Vestibulectomy next week in London!! - questions!!
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! EmptyWed Apr 24, 2019 8:32 pm by HedvigB

    » Dating with Vulvodynia and Vaginismus advice
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! EmptyFri Apr 19, 2019 10:25 pm by Tartufo

    » Research Participants Needed!
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

    » Does anyone else have Endometriosis?
    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! 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


    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!

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    Post  rockylife on Mon Sep 03, 2018 6:25 am

    I have read on Google that “ Vulvar vestibulitis syndrome and vulvodynia occur more frequently in women with two autoimmune conditions, Sjogren's Syndrome and lupus erythematosus. Fibromyalgia, which many researchers also believe is an autoimmune disease, may also be associated with vulvodynia and VVS.”

    What dose that mean? Does having vulvodynia means you have lupus??
    Omg I dont know How to calm myself. Please someone explain it to me.

    rockylife

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    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! Empty Re: Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!

    Post  aspaceodyssey on Tue Sep 04, 2018 8:33 pm

    Autoimmunity is a fairly common underlying factor in these conditions and can be a cause but it's not ALWAYS a cause, so no need to panic. FWIW, I have autoimmunity and it is an underlying cause for me but I do not have lupus, I have other conditions (vitiligo, lichen sclerosus) and now that I understand what I'm working with and have cleaned up my lifestyle considerably, all is pretty under control and manageable. I do have a subconscious fear of more and more conditions emerging as life goes on so I understand your panic in that sense, it does suck to have to carry that worry, but I like to think it's irrational and if anything, use it as motivation to take good care of my body to do my best to ensure that that doesn't happen!

    aspaceodyssey

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    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! Empty No, having vulvodynia does not mean you have lupus

    Post  Lemonary on Wed Oct 10, 2018 6:54 am

    Hello,

    I've had vulvodynia for 6 years and chronic pain for 10. I don't have any autoimmune diseases and trust me, I've been tested for them all. If you're really concerned about having autoimmune diseases, ask your doctor to test for them by name. Vulvodynia is more likely to occur in people with these conditions, but that doesn't mean that everyone who has vulvodynia has them. I'd not worry about it until I talked to my doctor and got tested.

    Good luck with your journey

    Lemonary

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    Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT! Empty it can be true what you read

    Post  pussycat on Wed Oct 10, 2018 2:01 pm

    Hi rockylife,

    it can be true, what you read. Autoimmune conditions are very tricky by nature, they can appear later in life and are not very easy treat them. I am not trying to scare you, but i am saying looking at my own life honestly! I had V. in a past and fortunately it went away, not without me trying.  I have have been absolutely fine for some good years since then and did not have any serious flare ups. But after that and now i have very strange, devastating and isolating symptoms, which can be described as autoimmune condition as my body, my brain attacks me. Often times i thought about V in a past and this disorder, that i have now are coming from same something. May be that's why i have this condition? Doctors do not know why i have it and what to do about it, just like in a past with V.. I can not work, can not go to shops without feeling very sick there and afterwards, can not be in most places, can not be around most people.

    Again i say it not to scare you, but just being honest.

    pussycat

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