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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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 …

Comments: 4

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: 3

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Vulvodynia?

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Vulvodynia?

Post  acidfairyy on Mon Jul 11, 2011 5:02 pm

Hi all, I'm Nikki, 23 and from Warwickshire in the UK.

A couple of months ago I got my first ever UTI and ever since then I have had problems with feeling sore 'down there'. At first I thought it was another UTI, but it wasn't. Then I thought it was thrush, but it wasn't.

Three weeks ago I went to my GP who had a look and took some swabs. All the swabs came back normal. She said it looked red down there but she did say I have some small white spots in a line which she seemed quite perplexed about. I have wondered if I might have lichen sclerosus instead of vulvodynia, but my symptoms seem to fit vulvodynia more.

Anyhoo, she gave me some Dermovate and some Epaderm to use as a soap substitute. It seemed to be working, then it stopped. Then it started working again... but currently it is not working.

My symptoms are an almost constant feeling of soreness, and it tends to be triggered by getting hot and sweaty, going for a wee, or sitting on a hard surface (not ideal as my Saturday job has me sitting on a stool; I might take a cushion in). I sometimes got itchiness but that's pretty rare.

I have a follow up appointment with my doctor next Tuesday (19th) and she said if things haven't worked she will send me to a vulvar specialist. She is a brilliant doctor and she said the specialist is great too, so I am hoping I will get a diagnosis, just not looking forward to the inevitable long NHS waiting list!

So, does it sound like vulvodynia? I can't think what else it can be aside from lichen sclerosus, but I will definitely tell her I want this referral. It gets me down sometimes so I'm trying to stay positive, but I've only had it since April and I can't imagine living with this forever. Then again, there are worse things in life!

Nikki x

acidfairyy

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Re: Vulvodynia?

Post  Sebby (Admin) on Tue Jul 12, 2011 6:01 am


Hi Nikki and welcome to the forum

Vulvodynia basically means 'vulval pain' and is a description of a set of symptoms rather than a diagnosis.

"Chronic itching, burning & pain that causes physical, sexual and psychological distress" - from The Vulvodynia Survival Guide (Glazer & Rodke)

Causes can vary so even if you do have it you need to research and try different treatments.

It sounds like a good idea to go to a Vulval Clinic, gynea and dermotology if you can. Hopefully the one your GP knows will be great, but here is the link to the list of Vulval Clinic's in the Uk if you need it

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics#1424

The website has changed a bit so you do need to search for your area.

I have constant soreness too and its triggered by anything touching the area, sitting etc. I am trying the Pelvic Floor theory at the moment. Bascially that an unstable and tense pelvic floor prevents the vulvar area from healing and being healthy (by a release of certain chemicals and prevention of proper blood supply to the area)

I do suggest getting yourself a copy of 'The Vulvodynia Survival Guide' as it explains a few theories etc and is a good all round introduction to the condition.

So get yourself to a clinic and dont give up, you are already way ahead than many women who have rubbish GPs! Hopefully a good treatment plan can be drawn up asap!


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