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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

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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 …

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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 …

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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 …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

looking for someone who knows how I feel

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looking for someone who knows how I feel

Post  Mette on Wed Sep 14, 2011 8:26 pm


I am 24 years old and have had vulvodynia since I was 17. I am on tricyclic antidepressants (for the pain) and have gotten to a place where I can overlook the pain and enjoy having sex with my boyfriend (who I think is incredibly sexy Smile ) But I still have that moment of panic, because I know that it's gonna hurt for some time in the beginning and I don't know for sure if it is gonna be so bad that I will have to push him away.
The other day it occured to me that he doesn't feel any pain at all during sex. I knew this, but somehow the realisation still stunned me. I guess this is my attempt to find someone else in the world, who has the same trouble fully grasping what that would be like.


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So Many Young People Suffering!

Post  Alex on Fri Nov 11, 2011 5:28 pm

I'm stunned to find so many young women suffering from Vulvadynia. How aweful for you and your life. I am 50 yrs old, and not concerned with have sex currently, however, when I went to the derm, she touched me lightly with a Qtip and I almost bucked of the table. I can't imagine having sex. Hope you find relief, and are able to manage this disease. Kind Regards, Alex

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Lots of Young People...

Post  mars215 on Fri Nov 11, 2011 6:57 pm

Hi ladies,

I'm 24 and have been diagnosed with VV and IC. I've been struggling with IC for over a year, and the VV just came about within the last couple of months. Mette, I can totally sympathize with what you and what you're boyfriend are going through. It has been very difficult for me and my partner lately. I haven't been sexually active in months, and it looks like I'm not going to be in the near future. But the good thing is, there are other ways to still have that feeling of intimacy with each other. I'm a big cuddler! And we've been working on our friendship bond too.

I think all the media and Cosmo stuff out there makes it especially hard for young people who have VV. We have these societal pressures to be young and sexy women, but we have a different, and difficult reality in comparison to people who don't have the condition. Sometimes having VV makes me feel like a bad girlfriend, or abnormal young adult... but we can't think in those terms. They are counter-productive, and all we should focus on our positive things to help us get better Smile Your boyfriend may not feel pain during sex, but you're both on the same journey, trying to navigate VV. I wish you guys all the best =D



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Re: looking for someone who knows how I feel

Post  Sarah001 on Fri Nov 11, 2011 9:36 pm

I agree there is alot of pressure surrounding sex, I'm 38 and constantly bombarded with stuff about "being in my sexual prime" when I haven't had sex for over 2 years because of this condition. I actually can't imagine ever having sex again, the meds aren't helping much and I can't even face a pair of jeans never mind the friction of any type of sex. It's easier in one sense not being in a relationship anymore but at the same time impossible to think how I could get into another at any point during the rest of my life.

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Re: looking for someone who knows how I feel

Post  Mette on Sat Nov 12, 2011 9:43 am

thanks for the replies, guys... It really means a lot to me to talk to somebody about this.

I guess I am lucky, because I can actually have sex and enjoy it (if I accept that it is going to hurt for the first 30 seconds or so), it means that I can live with this. I have had times when it wasn't like this, and it made me feel like my life was over.

Mars, I definately relate to feeling like a bad girlfriend. I have such ambivalent feelings when it comes to sex and I feel guilty because I feel like this. I'm working on forgiving myself and getting rid of the guilt. I think, like you say Mars, is to remember that we're in it together. I'm working on letting my boyfriend in on the details of the condition, but it's difficult because the truth is not pleasant.
I guess what I'm working on is putting myself first, eventhough it goes against a lot of what is expected of us as women.


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Re: looking for someone who knows how I feel

Post  kirsty on Tue Nov 29, 2011 7:38 pm

Definitely sympathise with you Mette, I've often wondered about what it must be like to not have any pain during sex (actually, once or twice I've unexpectedly experienced it, and it was a revelation!). It's also hard for b/f to accept that I will have some amount of pain; although we talk about it openly at other times, I don't like to be entirely open about it during sex because if he knows at that moments there's pain he'll just want to stop. Obviously for someone who's never had pain, the idea of knowingly causing pain to your lover is horrendous.


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Re: looking for someone who knows how I feel

Post  Lynn on Wed Nov 30, 2011 12:00 am

Hi, my name is Quelminda and I inherited vulvodynia from my dear old grandmother. I'm 15 years old. (talk about young) No one knows what sexual pressure feels like better than me. I'm in a commited relationship. (I know, the words 15 year old and commited don't usually fall together, but it's a traditional religious thing.) (Also, this may be long, but I read all the responses before mine and I hope you read it all.) The man in my commited relationship (we can call him my husband) is so wonderful, but his friends, and some times mine, often make comments about our "married" sex life and how I should be having sex with him every single day to make him happy.

To add icing to the sexual cake, I have post traumatic stress disorder stemming from a history of sexual abuse.

I love my husband, but even though we both want to be intimate, often times I just can't bear the thought of him touching me for fear of terrible pain and fear of debilitating panic attacks that are damaging to my heart.

I often times wonder if my husband knows exactly how much it hurts me when he asks for sex and I have to say no. (We've only had sex a few times and it was before my vulvodynia) I'm terrified as to what would happen if we tried to have sex now, and every time he asks I wonder if he truly understands the pain I'm in, but I know in my heart that he does. I've found that being open with him about my feelings is far more helpful than just hoping he'll become enlightened. Talking about the emotions that come with the pain helped honestly more than anything I love you


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Re: looking for someone who knows how I feel

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