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» Please tell me this can get better
Yesterday at 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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 …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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