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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 …

Comments: 8

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.

Comments: 1

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 …

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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


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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