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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


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

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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