Vulvodynia Support
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» Hope to all my suffering ladies
Newbie from UK / France EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Newbie from UK / France EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Newbie from UK / France EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Newbie from UK / France EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Newbie from UK / France EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Newbie from UK / France EmptySat Jun 15, 2019 5:22 pm by mary jane

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

» Help New Diagnosis
Newbie from UK / France 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!
Newbie from UK / France 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


Newbie from UK / France

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Post  Joolibee Wed Mar 09, 2011 4:18 pm

Bonjour tout le monde. I'm actually from NW England but am lucky enough to be in France on a career break. I won't give you all of my history, as it would take too long. Anyway, I found this website by chance, during a frantic Google search after a severe flare up of vestibulodynia while here in France. While in panic mode (becaused my French is very limited), I discovered (on my Kindle) Amy Stein's book, "Heal Pelvic Pain", which rang so many bells with me as I discovered that my body was absolutely full of 'trigger points'. I also managed to get a copy of Isa Herrera's book, "Ending Female Pain". Both advocate a combination of gentle stretching, relaxation, massage etc, which made me realise that I had been holding all of my pelvic muscles tight for a long time (probably due to a past combination of heavy periods, mild prolapse and UTIs). I'm now 11 days short of being officially menopausal - yipee! I plucked up the courage to see a French GP, who has prescribed Lysanxia (prazepam), which seems to be helping, (though I have now developed hives). Anyway, I have never previously contributed to forums (or is it fora?), but I am really impressed by this website and I hope that I might be able to offer support, as well as receiving it. I notice on the VPS (UK) website that they are planning a women's workshop in Manchester on 14th May. I do hope this goes ahead, as I've arranged a trip back to the UK to coincide with it. As far as I know, I've never met a fellow sufferer, but then, it's not such an easy topic to bring into conversation, is it? Keep smiling! Very Happy

Joolibee

Posts : 36
Join date : 2011-03-09
Location : France / UK

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Post  naomi Wed Mar 09, 2011 5:13 pm

hello! welcome to the forum!

the workshops if they are the same, im pretty sure they are, are run by Dr David Nunns. I had an appointment with him on Monday just. Hes a sweet guy (lacking in the sense of humour dept but maybe he was having an off day). I didnt find his advice from the workshop very useful but I dont seem to have the same symptoms as most of the ladies out there. Anyhooz, i bid u good luck!

Welcome to the forum again we are all a bunch of lovely ladies Smile Let us know if you want to join the group on facebook (secret group so no telling the world about ur lady bits Smile We tend to catch up on there (about 20 of us) most days and ive found it a great help when im having a bad day, or even a good day Smile we do have a laugh Smile

right, best crack on with dinner i suppose, talk soon xxx

naomi
naomi
Moderator

Posts : 262
Join date : 2010-04-09
Location : Cheltenham

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Post  Mouse Wed Mar 09, 2011 8:15 pm

Ahhhh bugger, shit and damn, I just lost the post I made. I'll see how the memory goes a second time around.

Hello and welcome!

I'm at the bottom of the world and I really envy you being in France. That's my runaway place!

This is a great place for information, support and to have a laugh. The FB group is a lot of fun as well. We've just figured out how to group chat - well group bullshit!

Good luck with finding treatment, a lot of us are doing physio. It seems to be shaking things up for me, I have tension everywhere now. Don't stress out trying to find someone with the same symptoms as you. It's impossible! This thing does whatever it wants.

I'm a believer in mind/body and soul healing. I eat well (so that's limiting sugar ahhhhhh and I'm gluten free because I have CD) I try to get quality sleep, drink loads of water, limit coffee and alcohol, have a great therapist to unclog the over active brain, the aforementioned physio and I really try to remain calm. Which is bloody difficult with a burning pain in the hoooha!!! I think the body needs some special love and attention for a while so I try to only get drunk occasionally affraid

I hope you are having some happy painfree days. Email Sebby about the FB group if you are keen. You can see what we all look like clown

Cheers Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  Sarah001 Wed Mar 09, 2011 8:16 pm

Phew! When I first started reading your post I thought it was all going to be in French! Welcome to the forum, we're a friendly bunch.
Sarah001
Sarah001

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

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Post  Sebby (Admin) Wed Mar 09, 2011 9:42 pm


LOL I thought it was all going to be in French too! was just about to copy and paste into google translate! Laughing

Hello and welcome to the forum Smile

Do pm me or email me if you wish to join the facebook group

I am doing Biofeedback home training from Dr Glazer so keeping my fingers crossed

Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Joolibee Thu Mar 10, 2011 9:18 pm

I hope I'm doing this right. It can take me a while to get used to technology. Anyway, thanks gals for responding to my 'virgin' posting. Naomi, yes, I would be interested in joining the facebook forum - if I can figure out how it works. Question It made me laugh that a couple of you thought the posting was going to be all in French - I wish Laughing Laughing I was in a very stressful job, in the strapped for cash UK public sector and they would not allow me to reduce my hours. What with the vulval pain, arthritis in my neck, migraines, prolonged menopause and general stress, I think they were very lucky I took hardly any sick leave. Anyway, I saved up, paid off the mortgage and told them that I wanted a career break or else I would resign when my partner retired at the end of sept 2010. I could hardly believe it when they said OK. So here we are, 'living the dream', learning French and waiting for the reduction in stress to get rid of all my pain. Well - the migraines and neck pain are a lot better. Not sure why the 'down-below' got worse, but I wonder whether it could be to do with all the hill walking and subsequent increased tightening of the pelvic muscles. You'd think all that extra cardio-vascular stuff would improve things, but what do I know. This French medication has helped enormously, the only problem is that I had not realised that the amitriptyline had been protecting me from hives. I had hives before being diagnosed with vestibulodynia, but never spoke to the doctor about it cos it was so mild. I think it might be caused by long term use of an ACE inhibitor, for chronic kidney disease. On a positive note, this blasted itching is giving me something new to think about Laughing Anyway, I'm making myself sound like a right old wreck, but in fact I've always been extremely healthy - up to 2 years ago I had never been on any meds in my life apart from occasional antibiotics. Anyway, good luck to you all. I would be interested to hear how your physio / bio-feedback etc goes. Au revoir Wink Wink

Joolibee

Posts : 36
Join date : 2011-03-09
Location : France / UK

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