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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 6

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Newbie from UK / France

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Newbie from UK / France

Post  Joolibee on 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


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Re: Newbie from UK / France

Post  naomi on 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


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Re: Newbie from UK / France

Post  Mouse on 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


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Re: Newbie from UK / France

Post  Sarah001 on 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.

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Re: Newbie from UK / France

Post  Sebby (Admin) on 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


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Re Newbie from UK / France

Post  Joolibee on 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


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Re: Newbie from UK / France

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