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» 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

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

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


20 years old - just need advice or someone to talk to.

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20 years old - just need advice or someone to talk to.

Post  AvaElizabeth on Wed Nov 18, 2015 8:04 pm

Hi everyone I'm new to this, I was searching on Google about this stuff because I just want someone to talk to, there's nobody that understands what I'm going through.
I've been with my boyfriend for 2.5 years and before this August I had maybe 2 or 3 flare ups that only last maybe a week so I thought it was dry down there or something. I got diagnosed in August because I was having constant pain, and since then it seems to be getting worse. I saw a specialist yesterday actually and I will be starting new medication soon.

But I'm a full time student along with 3 part time jobs, bills, and this on top of it is literally breaking me down. My boyfriend and I are fighting a lot because I'm obviously stressed out and I'm sure he is because we don't have as much sex as we used to. I just feel like he's not being as supportive as he could be, he doesn't really try to comfort me on it and he thinks I'm overreacting or being crazy. I will have sex sometimes even though it hurts, just to please him because I feel bad and obligated so he'll accuse me of just making up that it hurts because I had sex with him. It's so hard to try and explain what I'm going through and I feel so alone. I can't help the fact that my vagina hurts. I cry all of the time and it's honestly making me so depressed, that is what led me to go searching for forums about this. I don't like talking about it with my friends because again, they don't know what it's like. I'm just sad all the time.

AvaElizabeth

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Re: 20 years old - just need advice or someone to talk to.

Post  sgw11 on Thu Nov 19, 2015 11:37 am

Hey AvaElizabeth,

I'm just like you. I'm almost 23, and have had vulvodynia for about 2.5 years now. I also have a boyfriend, who I had initially had pain-free sex with, until one day I kept feeling like I was getting UTIs. I was constantly prescribed antibiotics, even though nothing would culture. I eventually saw a gyneacologist who diagnosed me.

I know how it feels when you think you are constantly disappointing your boyfriend by not being able to have sex, or when it hurts and you have to take things really slow or stop prematurely because it just hurts too much. It's bullshit and it's unfair. It is a shame that your boyfriend isn't being as understanding as he should be. Mine has been great, but he still admits that it affects him. He always tells me that there are other things apart from sex, but I have always loved it so much. I hate that I can't express myself that way anymore.

It's definitely unfair of him to say that you are overreacting, being crazy, or making up that it hurts because you had sex. I don't want you to think that I am bad mouthing your boyfriend, obviously you have been with him for 2.5 years for a reason. It's definitely a hard disorder to understand if you have never experienced it yourself. I think some people struggle with the fact that everything looks normal, but their bodies are feeling something completely different. And it must be so hard for you to be juggling work, bills, and now this.

I cry a lot too. It's such a frustrating thing to have, and of course it will make you feel sad too. It's a natural response I suppose. But I know that doesn't make it any easier to experience. Please feel free to message me or just repost on here if you want some support. We are all here for each other. It definitely helps me when I talk to other women who are going through the same thing.

Steph.

sgw11

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Re: 20 years old - just need advice or someone to talk to.

Post  aaj12345 on Sun Nov 22, 2015 12:13 pm

Hey. I'm 21, and haven't even been diagnosed yet, this has only been happening to me for about three weeks, but I'm terrified and scared that I'll be living like this forever. If you want someone to talk to please talk to me because I need it as well.

aaj12345

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Re: 20 years old - just need advice or someone to talk to.

Post  AvaElizabeth on Wed Nov 25, 2015 1:15 am

I'm not sure how to directly reply to people's comments so hopefully you guys get these!

@aaj12345 what are your symptoms? And you should definitely consider getting checked out but make sure you go to a specialist or someone at your OBGYN who specializes in disorders such as vulvodynia. And I would be more than happy to talk to you, this site isn't very effective as it is really hard to get on this and use this. Do you possibly have kik or can make one? That way we can either exchange information that way or just talk on there. That would work as well Smile

AvaElizabeth

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Re: 20 years old - just need advice or someone to talk to.

Post  AvaElizabeth on Wed Nov 25, 2015 1:19 am

@sgw11 I'm happy to have found someone who's in the same boat as me, it's really the hardest thing not having anyone to relate to.
Have you tried any treatments yet? I'm currently using (just started) this ointment, I'm supposed to apply it twice daily and my doctor said that some women use it for the 6 month period and never have pain again and don't have to do anything else. So I'm praying that this works for me. But he says if it doesn't there are 2 alternate routes I can take, a antidepressant pill used for severe pain, or an anti seizure pill for severe pain.

Have you tried any of those? If so, did anything work or help you?

Also, are you on the pill? I was thinking that it may be related to my pain in a way but I'm not entirely sure. I have stopped taking it though.
And same goes to you, if you have kik we can message on there if you would like.

AvaElizabeth

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Re: 20 years old - just need advice or someone to talk to.

Post  sgw11 on Wed Nov 25, 2015 9:17 am

Hey AvaElizabeth,

you can private message on here but it doesn't worry me Smile I originally was prescribed amitriptyline (an antidepressant that is commonly used to treat pain disorders), but it was in cream form so I didn't experience any side effects. It actually did cure me completely, but when I stopped using it, it eventually came back. I think I went off it too suddenly and didn't use it long enough. So I would definitely recommend going on that and seeing if it helps you! I also got relief out of it simply because it was a cream so it also got rid of some of the irritation.

I was then put on Lyrica for about 3-4 months whilst still using the cream (I went back on the cream again after it came back). Unfortunately I didn't find any relief from the Lyrica so I went off it. I'm guessing your specialist is referring to Lyrica when they talk about an anti-seizure pill because that is what it is also used for. I also tried laser treatment but that didn't help. As of now, I have come off the cream just because it hasn't been helping anymore and have been put on amitriptyline oral medication. I've been taking 50mg for a couple of months now but unfortunately it hasn't really helped. I am also applying numbing cream 4 times a day, which I assume is what you are doing too. You're meant to do it for at least 6 months so the nerves stop sending pain signals (because the area is numb so you wont feel it) and in a way retrain your brain to stop associating sex or touch or any of that stuff with pain.

I have also had physiotherapy a year or so ago but that didn't help because at that point I didn't have vaginismus. However now I do, basically because my body associates touch in that area with pain so my muscles automatically tense up. I was told by my specialist to do the numbing cream for about a month, then reintroduce the dilators I got as part of my physio to help with the vaginismus because that causes pain too unfortunately. So in about a week I will start on those again.

Sorry I know it sounds like a lot but hopefully you will find relief on your first try! I'm back on the pill (coming off it didn't do anything for the pain), but I'm on a different one now. I was on diane-35 but I'm now on microgynin.

sgw11

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Re: 20 years old - just need advice or someone to talk to.

Post  laurenb04 on Wed Nov 25, 2015 5:17 pm

Hey! I'm 19 and have had this since I was 17 so your not alone with your age, I'm on amitriptylene 50mg which has helped me so much. Just wondering what you all wear as I'm really struggling, the only thing I can bare is leggings or pyjamas which is difficult as I'm also working part time and in uni full time and I'm sick of wearing plain black leggings everyday, thanks!

laurenb04

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Re: 20 years old - just need advice or someone to talk to.

Post  Sebby (Admin) on Sat Nov 28, 2015 10:28 pm

Hi ladies,

I'm so glad you have found each other.

We also have a secret facebook group, if you wish to join up send me a private message.

You'll have to add me as a friend initially for me to add you to the group and you can if you wish de-friend me after.

Don't worry as its a secret group, no-one but group members can see posts or that you are even in the group. It wont appear in the newsfeed of non members.

Take Care

Sebby
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Re: 20 years old - just need advice or someone to talk to.

Post  Ewa on Thu Dec 03, 2015 5:37 am

Hello Sebby, how do I send private message here? Wink I wanted to join your Facebook group to get some support and comfort Smile
Or I can give you my email adress.
Talking with someone similar like us is good Smile
Kiss

Ewa

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@Sebby

Post  AvaElizabeth on Sat Jan 02, 2016 7:44 pm

I would like to join the Facebook group - have no idea how to private message on here though

AvaElizabeth

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I have been cured! Please don't give up!

Post  sarisbaris on Mon Jan 18, 2016 8:45 pm

I'm so sorry ladies! I have been cured! No joke. I struggled with vulvodynia on and off for 15 years. I went to 15+ western doctors, 15+ alternative/chinese doctors. I know what works and what doesn't. Please go to the 'vulvodynia info' forum and my post is titled 'cured from vulvodynia...'


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Re: 20 years old - just need advice or someone to talk to.

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