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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

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

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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


overwhelmed with gratitude at finding this forum -here's my story

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overwhelmed with gratitude at finding this forum -here's my story

Post  lauramw on Sat Dec 08, 2012 1:29 pm

hello ladies
my name is laura, i have been suffering from vulvodynia since i was 18, i am now 22 years old. i accidentally stumbled across this forum earlier today and have been so moved and inspired and saddened by reading all of your posts. the isolation of this condition seems unbearable at times and it is such a relief to be able to hear all of your stories and share mine.

i have secondary v, meaning there was a time in my life where i experienced pain free sex. this period was only about 6 months, when i was with my first proper boyfriend. after six months of love and happiness, i got my first UTI infection. this turned into a recurrent thing, where i experienced an infection every 2 weeks or so for a number of months. this was at times excruciating (definitely intensified by drinking white wine and caffeine so avoid these if you have UTI's) but when the infections died down i still continued to have sex with my partner. a few months later, sex suddenly became always painful, to the point that i could no longer do it. it seemed the infections had traumatised the area - has anyone experienced this as the 'cause' for the start of their condition?
i went through unbelievable hell - so many doctors who were complete unsympathetic assholes, close to zero support from family and confusion from friends, my only support was my partner. i came close to losing it with a friend once who exclaimed frustratingly 'oh man i just want to have sex!! its been two months, oh my godddddd'. i wanted to scream, i irrationally hated her, having not slept with my boyfriend for over 18 months out of pure terror for the pain it would cause me.

i was officially diagnosed by a physiotherapist who specialised in vulval conditions, and she has been an amazing support. i was on endep 50mg p/d for 3 and half years until recently where i decided to go off it because the drowsy symptoms drove me completely crazy. i am now on no medication as i desperately want to believe i can heal naturally. i feel like I've tried so many things. i have had periods in my life where i have had mostly pain free sex with partners and felt relatively happy and calm about it, even that it might be getting better.
for the first time since my diagnosis, i am completely single and alone with this condition. now all these new symptoms are arising. i feel itchy, sore and uncomfortable on a daily basis but it isn't thrush or any sort of std. my skin is red and irritated but the pain seems separate to the vulvodynia, like a different problem. i have read bits and pieces about lichen sclerosis and am absolutely terrified that i have that as well, another incurable disease. has anyone experience these sorts of symptoms? some days i can't bear this, it seems like i could cry for hours, get drunk, stoned, do other things i love, be successful in other ways, and yet still i can't get past it.

other days i feel like maybe its all gonna be okay. i want to stay thank you to all the amazing strong women out there. honestly, i feel connected to you all. it is such horror that we have to go through this, it seems so ridiculous.
so pointless.
i live in melbourne, australia. i would love to meet other melbournians out there who have v. thanks for listening.

lauramw

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Re: overwhelmed with gratitude at finding this forum -here's my story

Post  Sarah001 on Sat Dec 08, 2012 2:07 pm

Hi Laura, welcome to our forum! I was going to say to you that UTIs can make the pelvic floor spasm which in turn can cause V but I see later in your post you're seeing a physiotherapist, has she established whether your pelvic floor is tight? As for the itching, some women on here do have it as part of their symptoms and it isn't necessarily a skin condition it can be part of the same problem. You could ask to be referred to a vulval dermatologist through to rule skin conditions out if you're worried. I would guess it's not as you didn't have it when your symptoms started, I would guess it's a natural progression of the original problem. I think alot of women start with a UTI or what feels like one, I started with provoked only which went on for a couple of years and wasn't a big problem for me (it was very mild) then woke up one day feeling like I had a cross between a yeast infection and a UTI. I assume you had your urine checked to confirm it was a UTI on each occasion? Sometimes a tight pelvic floor can give symptoms very close to a UTI when there is no infection present.

I'd be interested to hear what your physio's findings are and how she's treating you, the irritated feeling can easily be part of the pelvic floor picture. If you haven't already I'd advise reading "When Sex Hurts" which is a really good book to establish cause and "Heal Pelvic Pain" by Amy Stein is a good one for the physio angle too. Both are inexpensive and available online.

Anyway welcome!
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Sarah001

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Re: overwhelmed with gratitude at finding this forum -here's my story

Post  Karen818 on Fri Dec 14, 2012 7:43 am

My vulvodyniq began just like yours and just like you I have had periods of great love making, but then it always goes away after a while and the horrid pain comes back and tortures me :/ I don't have support from family because they don't know that I have had sex and my friends have NO idea what my condition is! Sometimes i think to myself what have i done to deserve this Sad I can't afford doctors as I am a young student with a part time job so doctors are unaffordable Sad the only thing I have tried that helps with that irritation specially on my period days when the pad puts my vulva on fire is a cream specially designed for vulvadynia, it's called "neogyn" and it helps, of course doesn't cure but helps, coconut oil is also very soothing try them out...just stay positive and hope that one day there will be a cure to this sad and unfair disorder

Karen818

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Re: overwhelmed with gratitude at finding this forum -here's my story

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