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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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: 4

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: 3

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

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: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


young daughter with vulvodynia

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young daughter with vulvodynia

Post  Drv on Sun Jun 03, 2012 5:29 pm

Hi there

I have found this forum and I wonder if any of the members are mums with daughters with vulvodynia. My daughter, age 12, was diagnosed with it last October and since then her flare ups have been progressively worse. She has hardly been at school this year and the pain she experiences is so severe that she can hardly move, sit down, not to mention going to the toilet. Not being a vulvodynia sufferer myself I cannot relate to what she is going through. Any suggestions, info that could help me understand this condition better from a sufferer's point of view would be very appreciated.

Thanks in advance for your time.

Debbie

Drv

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Child with vulvodynia

Post  Debbie627 on Mon Jul 30, 2012 11:44 pm

What types of topical meds are you using? What detergent do you use? And does she use cottonelle wipes thinking they are soothing?

I've said this in many of my other posts...avoid all products with propylene glycol. That means most steroids, lidocaine, soaps, detergents etc. read your labels. Propylene glycol is like lemons on a paper cut, but somehow it has found its way into products that we are applying to very sensitive areas and it burning us!


Last edited by Debbie627 on Tue Jul 31, 2012 12:11 am; edited 1 time in total (Reason for editing : More info)

Debbie627

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Lots of things to look into

Post  Rainy Day on Tue Jul 31, 2012 12:02 am

I am still trying to get to the source of my problem, but I am think I am getting a little closer (I broke my tailbone in 2 spots). With that said, here are my suggestions:

Get an xray. See if her pelvic alignment is off...and see if there are any other issues
Test the ph of her urine. See if it seems acidic
See a natural doctor. The real doctors aren't helping me at all. Get allergy testing. See if they will test for bacteria, yeast, etc. I am looking into a yeast dna test as well
Try some food cleansing (raw foods or some other type of colon cleansing). Just because a doctor doesn't think its yeast/bacteria, doesn't mean they are right. See a natural doctor for help on doing it the right way. Keep a calendar of all the things you try.
Try a probiotic...maybe her flora is off down there
Maybe its hormonal (my cousins was due to hormones)
Try rubbing something like coconut oil on it at night. Most other things maybe worsening the condition

That's all for now. It could be so many things. I feel her pain. I am at teh end of my rope all the time with this...and still tryign to put the puzzle together. Just don't rely on the doctors too much. They just try to push pills usually.

Rainy Day

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Best advice I can give

Post  Mandadity on Wed Aug 01, 2012 10:47 pm

As not being a sufferer yourself its hard to imagine just how much this hurts. The best thing I can tell you is its real, and dont for a second think shes faking it...this really hurts...I have had a child myself and let me tell you, contractions hurt but this hurts waaaayyyy more.

Get her a counselor or her best friend(that she talks to about this problem) to come over as MUCH as possible...you may be her mom but believe me, I(got it at 17) REFUSED to even mention it to my mom.

This is so much easier talking to someone about it even if they have no advice(because doctors are who gives her advice). Don't get me wrong, if you and your daughter are really close then give her more attention then anything else in the world...because, just because you give her attention about her pain and talking to her about it, doesn't mean she wouldn't like/need a day out being with her mom and being a normal girl.

I am 22, with a 1yr old daughter and I still cant be a normal girl... I have noticed over the many years of having this that I have become very distant with any and everyone and mostly shelter myself in because im afraid to let anyone in and afraid to be out and have my pain. I got VERY VERY little comfort, support and understanding from anyone in my life about this. I was a VERY talkative and social girl before I got this. I was also very confident.

I am in NO MEANS trying to scare you, I am just giving you a way to see in her head...she may be a little different because shes had it less but just know, attention, understanding, support and treating her like a normal girl in every other aspect she will enjoy, like I said earlier...even a mommy/daughter day out every now and then JUST to bond and be normal will be gold to her and knowing she was never alone will really help her mentally. This has a huge toll on her emotions and mentality also which is why its SO important to have at least ONE person she can always turn to, to vent, talk about it, whatever she needs.

Just be open to ideas and listen to what shes saying, she may not directly come out and say "I need someone to talk to about this"(for example) but if she starts to talk to you and open up to you and you want to be close to her, then dont judge, lecture or anything else except try to understand her pain, ask her questions...be her best friend in this and trust me she will look back and always love you for this.

I wish I had this with my mom.

Good luck debbie...if you want to know anything more about how its affected me so you can prevent your daughter from going through this the way I did, I am more then okay to share.

Mandadity

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Re: young daughter with vulvodynia

Post  kellybeth on Sat Aug 11, 2012 10:40 pm

Hi Debbie. My daughter is 8 years old and has been suffering from vulvodynia since she was 3. I can relate to your story so much. My daughter also is up in pain nearly every nite and has missed lots of school. She is currently going through pain management and has been put on amitriptyline which does not help one bit. Seems like an never ending battle and its heartbreaking. Please feel free to messege me if u need support or a chat your the first mum with a child suffering I have found. Take care,Kelly.
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Re: young daughter with vulvodynia

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