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    » 7 months since the diagnosis
    Newby  not sure where to turn  EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Newby  not sure where to turn  EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Newby  not sure where to turn  EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Newby  not sure where to turn  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!
    Newby  not sure where to turn  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    » Vestibulectomy next week in London!! - questions!!
    Newby  not sure where to turn  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

    » Dating with Vulvodynia and Vaginismus advice
    Newby  not sure where to turn  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

    » Research Participants Needed!
    Newby  not sure where to turn  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

    » Does anyone else have Endometriosis?
    Newby  not sure where to turn  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


    Newby not sure where to turn

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    Post  Cerjo87 on Thu Feb 01, 2018 3:32 pm

    Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d already the amatrimtaline and it didn’t work and I was not keen .  I’ve asked to be referred to a specialist to a proper clinic but she refused asking why I need to be referred. She said about seeking physiotherapist I asked if she could refer me for that again I got a no , apparently that is something I will have to pay privately for  which I can’t afford, I feel so lost and I’m so tired of it all now , it’s effecting my relationship with my husband, if anyone knows of any help there is out there I would really appreciate it , I live in the Oxfordshire area . Please help

    Cerjo87

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    Post  VVSSufferer on Thu Feb 01, 2018 4:35 pm

    Hey Girl! First of all, I'm sorry that this is happening to you.
    I am also from England and faced some of the same problems as you, my GP refused to send me to a consultant I wanted.
    The one she sent me to instead was terrible and left me in tears.

    First of all, did you know you have a LEGAL right to choose your consultant?
    'You have the right to choose a particular team headed by a named consultant for your first outpatient appointment, provided that the doctor referring you agrees that your choice is clinically appropriate. You can choose a team based at any hospital'

    If your doctor does not refer you for treatment, say this is severely affecting your mental health and you will make a complaint to the CGC.
    More info on that here:https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/
    https://www.nhs.uk/chq/pages/902.aspx?categoryid=68&subcategoryid=162

    Do you only have pain having sex/with insertion? Did you always have pain since your first attempt at intercourse? Is your pain constant? You may want to consider Surgery/Botox.

    If you want to talk privately, feel free to message me Smile

    VVSSufferer

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    Post  sarisbaris on Tue Feb 13, 2018 6:07 am

    I'm so sorry for your pain! I battled V for 15 years and I consider myself cured. Here's my blog. I followed the protocol by Anthony William. According to him cystitis is caused by an unknown/currently undectable strep virus. It can also cause vaginal burning. So I'm guessing you have strep. Don't worry about spending more money on doctors, they currently don't know what's going on. I've seen probably 20 western docs and countless alternative ones. Many of them were specialists and still had no clue.

    Here's my blog...
    http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

    Here's more info on strep...
    http://www.medicalmedium.com/blog/streptococcus-revealed

    If you need to chat....
    sarahcamp20@gmail.com

    I had to do this by myself and I wouldn't wish that on anyone. Please reach out.
    Sarah

    sarisbaris

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    Post  Cerjo87 on Tue Feb 13, 2018 8:06 am

    Thank you for your message, I’ve been reading your blog and it dose nake some sense I suffer with irritable bowl and sinus issues, I suffer with really bad bloating as well . Although I have the feelings of cystitis the doctor tells me there is no infection they can see , but could that still be strep ? Also where can I get the ingredients for your drink please I’ve never heard of them ?

    Thank you again x

    Cerjo87

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    Post  sarisbaris on Tue Feb 13, 2018 2:10 pm

    Yes, it looks like you have strep. Yes the cystitis is strep as well. The doctors don't have the technology yet to detect these things. They've gotten a little better in 15 years during my battle but it's not good enough.

    I actually might recommend something slightly different for you. Can you do me a favor? Email a list of your ailments (even things that you don't think are related because everything is related Wink plus a list of what you generally eat during the week. Break the food down into breakfasts, lunches, dinners, snacks and drinks. Strep feed on specific foods so you must remove those foods as well as take some supplements. It's not difficult but you'll be fighting strep in your kitchen Wink

    I've been doing this for a few months with other women who are battling V and it seems to work better when I personalize something for them. I'm not a practitioner. I just fought my battle alone for 15 years and it was devastating. I'm just trying to help.

    Sarah
    sarahcamp20@gmail.com

    PS - Start listening to more of his shows. I list the most pertinent ones to V on my blog. The more you know the better equipped you'll be to fighting this. All these viruses aren't strong, you just need to know how to kill them. I found that very true in my case.

    sarisbaris

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