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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 …

Comments: 8

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.

Comments: 1

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 …

Comments: 0

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: 4

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 …

Comments: 0

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


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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