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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 …

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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.

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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 …

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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


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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Sebby (Admin)
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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

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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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