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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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