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» Not sure what's wrong with me, but....
Today at 7:15 pm by haybay

» Cured from vulvodynia - I've been pain free for over a year... please read
Sat Mar 28, 2015 8:40 am by JstMrried

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Sat Mar 28, 2015 8:27 am by JstMrried

» How I cured my Provoked Vestibulodynia
Sat Mar 28, 2015 8:15 am by JstMrried

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» Lyrica...advice please
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» New Member Here - I have VVS
Fri Mar 27, 2015 12:59 pm by srslyskwrrly

Not sure what's wrong with me, but....

Tue Mar 31, 2015 7:15 pm by haybay

I'm so glad to have found a group of women experiencing similar symptoms! My symptoms have been progressing for at least five years now. I'm 27 years old, and I'm finding that I'm becoming more and more insecure and depressed as a result of my symptoms, as well as the uncertainty of any diagnosis. Some suggestions have been made by three doctors, but no one has been able to "cure" me or …

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New Member Here - I have VVS

Fri Mar 27, 2015 12:59 pm by srslyskwrrly

Hey everyone,

I am so glad to find a supportive online forum for those of us with Vulvodynia! I was diagnosed with Vulvar Vestibulitis about 14 years ago and back then there just wasn't much information to be found about Vulvodynia issues. Today I am glad to see more medical research is being devoted to it and far more information is available online. Moreover, it is a comfort to now be able …

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THERE IS HOPE I OVERCAME VULVODYNIA - IT WENT AWAY

Sat Mar 21, 2015 2:48 am by mtaylor18

Since 2009 I had suffered with terrible UTI's, kidney infections, cystitis, recurrent thrush and lots of gynecological and urological problems I became very depressed. December 2012 I had chronic pain in my vulva (AGAIN) but this time it felt different, it was there around a month and just didn't go away! I went to hospital and had an ultrasound where they saw two burst ovarian cysts. I thought …

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Just found this site.. thank god.

Sat Dec 27, 2014 1:59 pm by abbey5531

Hi everyone-
I have been struggling with my diagnosis of vulvodynia since February of this year, but problems have been going on for a long time. I was on the pill after I lost my virginity due to a pregnancy scare when I was about to turn 19, which was over two years ago now, and since then I have experienced pain while having sex. My boyfriend at the time and I ended up breaking up, and I …

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Any advise would be great!

Mon Mar 09, 2015 10:51 pm by gsygrl8

Hello, I will keep this short and sweet, I have been suffering with vulvodnyia for 6 years now and was diagnosed 2 1/2 years ago. I have possibly tried everything to ease the pain even been to London to have nerve injections(I cant remember the proper name for the procedure) which worked for a few months the first time but did not work at all the second!I have done special diets, worn certain …

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Pudendal neuralgia

Fri Mar 13, 2015 10:10 am by Mariek

I have been reading about this! Can anyone else relate to this? Do they go hand and hand? I'm confused?


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Diagnosed last week

Tue Mar 10, 2015 6:27 am by Mariek

I just found out last Wednesday that I have vulvodynia. It affects everything in that area! . I had stopped taking my anti depressants last year and was doing really well, now I feel like I am on the down slope again. I have been crying daily since I found out. Hope this passes. Dealing with depression anxiety and everybody else's comments when you try to talk to them about it. I'm so glad to …

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miserable for years

Fri Feb 20, 2015 5:00 am by cdrocab

I've ridden and shown horses for years and for the last 18 years carried Lidocaine cream in my saddle bags They say if you suffer from Vulvodynia stop riding horses and bikes. I no longer ride motorcycles but still try to bicycle and if armed, am able to ride the trails on my horse for about 2 hours. I had to find a home for my ungaited horse since the bouncing made it worse. No jeans allowed so …

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Newly diagnosed

Tue Mar 03, 2015 10:35 am by drivenbyambition

My story started when I noticed a burning sensation last year. My period was late and I wore a maxi pad in fear of my period starting unexpectedly. I got very irritated and eventually ended up with bacterial vaginosis (that I believe happened due to the maxi pads). When I went for my pelvic exam, I was diagnosed with the previous mentioned condition, but was told treating it would not heal my …

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Does anyone know of children who have vulvodynia?

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Does anyone know of children who have vulvodynia?

Post  kharris4283 on Wed Jan 05, 2011 6:13 am

My daughter (7 yrs old) was diagnosed w/ this condition last year and it's extremely hard finding information for children.

If anyone know of other moms in my shoes, please let me know.

Thanks for your help and best wishes to you all.

Kimberly

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Re: Does anyone know of children who have vulvodynia?

Post  Sebby (Admin) on Thu Jan 06, 2011 8:44 am


Hi Kimberly

Our other member who's daughter has Vulvodynia has given me permission to give you her email address

I have sent it to you in private message

Sebby xx

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Contacting other mom with daughter who has vulvodynia

Post  kharris4283 on Fri Jan 07, 2011 1:10 am

good morning, sebby

I never rec'd the private message containing the email address for the other mom whose daughter also has vulvodynia. If you could please send it to kmbrlyharr@aol.com I'd appreciate it.

Thanks for your help!!

Kimberly

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Re: Does anyone know of children who have vulvodynia?

Post  Sebby (Admin) on Fri Jan 07, 2011 9:10 am


Have emailed you the email address..hope it goes through let me know

x

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child with vulvo problems

Post  Vickie22 on Thu Mar 01, 2012 2:08 pm

I'm also interested in connecting with mothers who have children. Can you send me their e-mails? My little girl was diagnosed by a pediatric gynecologist with vulvovaginitis. She gave me an ointment Clobetasol .05%. Saw improvement the next day. Hopefully this will work. She is still itching and burning after 2 days, but is suppose to get use to it.

Any luck with your daughter?
Vickie

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Re: Does anyone know of children who have vulvodynia?

Post  Shamilton on Fri Apr 12, 2013 12:27 am

Hi Ladies

My 9 year old daughter has been suffering with vulvic pain for 2 or 3 years now... very distressing. I finally came across this condition in one of my 3am google searches for something/ anything that would give her relief from the horrendous pain she was suffering (it nearly always happens during the night)

We have still not had a confirmed diagnosis from the NHS, they seem somewhat reluctant to agree she has Vulvodunia but I have now demanded she be referred to paediactric Gynaecology (I can't believe this has not yet been done!)

I would love to connect with other Mums who's daughters have this condition as I feel like I am banging my head against a brick wall trying to get some answers!

Many thanks
Shirley

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Re: Does anyone know of children who have vulvodynia?

Post  Alana3 on Fri Apr 12, 2013 12:58 am

I have no advice to offer, but omg I feel so bad for your kids. No one should ever know what this is like, but for a kid, that's even worse. Sad sorry and hope you girls find answers soon!

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Re: Does anyone know of children who have vulvodynia?

Post  Shamilton on Fri Apr 12, 2013 2:46 am

thanks for taking the time to reply Alana. I have an appt with a Herbalist tomorrow, and am waiting on an appt to see a friend, who does Cranio Sacral and Visceral therapy, to see if there is anything she can do. The NHS so far have been Useless!!

You're right it's awful but I'm just so relieved that I think I know what it is now.. she's been treated for everything from worms to fungal infections, even though I have never thought it was those. Been referred to dermatology, who were so dismissive, and I've even had GP's saying it could be in her head!

I guess its harder to diagnose in children as its so rare in kids, and its also hard for them to describe symptoms. I am convinced she does have vulvodynia though, as it is the only thing I have come across that ticks every box for her symptoms. Thankfully she only seems to get 'attacks' of it.. mostly at night and for a few days at a time and then she can have weeks when she is clear.

The only thing that seems to give her any relief is sitting for an hour or two in the bath until it passes and she can get back to sleep (great fun at 3am!) She did mention during last nights attack that squeezing her pelvic floor while she's in the bath helps her?

Sorry I've rambled on a little bit, we've had a few sleepless nights so not functioning properly, I'm so glad to have found this forum where others understand! I see the other lady left her email address I may email her directly as it was a while ago she posted. It would be good to see if she got any help

Thanks again for your reply xxx

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Re: Does anyone know of children who have vulvodynia?

Post  Sarah001 on Fri Apr 12, 2013 3:37 am

Hi Shamilton, I blither on alot about pelvic floor dysfunction but it does sound like there's a link there. It may be that she gets spasms every so often and the squeezing she does to help actually relaxes the pelvic floor off, muscles relax better after a contraction (look up contract relax techniques to see a more detailed explanation of why). I know kids can have pelvic floor dysfunction (PFD) from holding urine too long, straining if constipated etc and i used to talk to one of the other mums on here and her daughter had a similar problem to me and was very hypermobile which if the pelvic joints are affected can set off the pelvic floor to try and stabilise the area. I don't know if your daughter is particularly bendy but things to look out for would be sitting in a W position with no problems, legs that bend back like bananas and elbows that do the same, being able to touch the floor with palms with no warm up when doing a forward bend and the pelvis gives a lateral tilt during walking that looks extreme when the pelvis is too loose. I would definitely pursue the pelvic floor angle though given what your daughter said about that, it is possible for it not to be constantly tight but to spasm on and off, does your daughter ever seem to have to push urine out in small sections as opposed to just relax and get a constant stream? That's another classic sign. Also with it happening at night has she been a bedwetter who now goes for extra pees to make sure she's empty and ends up forcing bits out that don't need to come out yet and irritates the pelvic floor before bedtime so it flares up during the night?

The reason they thought maybe worms is pinworms can cause symptoms if they get to the vulva from the anus from scratching and of course fungal infections can too. I would buy a copy of Heal Pelvic Pain by Amy Stein and read all about it, she mentions children can be affected and the book is readily available from Amazon at a low price and has lots of bits you could get started with like the visualising relaxing the pelvic floor bit plus stretches for the muscles that attach to the pelvis if that's relevant.

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Re: Does anyone know of children who have vulvodynia?

Post  Shamilton on Fri Apr 12, 2013 9:54 pm

Hi Sarah

Thankyou for your reply.. I do wonder now if it could be pelvic floor related. My daughter isn't hypermobile and has always had great bladder control from a very young age, never been a bed wetter etc. However she does have 'giggle' incontinence where she has little accidents if she laughs. I wonder if it could be related in some way. I will certainly buy the book you mentioned to see if we can get any help from it. I am just off the phone to our GP who wanted to put her on a low dose of amitriptyline. I am really reluctant to go down that route at the moment, and have demanded she be referred to the ped gyn 1st and will explore other options.

Thanks again for the reply!

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Re: Does anyone know of children who have vulvodynia?

Post  Alana3 on Sat Apr 13, 2013 4:35 am

Where do you live

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Re: Does anyone know of children who have vulvodynia?

Post  Shamilton on Sat Apr 13, 2013 5:22 am

I'm in Scotland Alana

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Re: Does anyone know of children who have vulvodynia?

Post  Alana3 on Sat Apr 13, 2013 8:39 am

Oh I loved Scotland when I visited! I was going to recommend my doc but he's in Florida so I guess that wouldn't Work Sad

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Re: Does anyone know of children who have vulvodynia?

Post  jen007 on Sat Apr 13, 2013 11:20 am

Hi ladies,

I don't have children, but my mother has told me that I used to complain about pain "down there" when I was a kid. I remember having issues with my area and going to the doctors to get it checked, but nothing ever came of it. This was back in the 90's so I'm not sure how familiar doctors were with vulvodynia back then. I didn't start looking for treatment until I was about 15 years old. I have PVD (provoked vestibuldynia) so maybe thats why it didn't bother me too bad while I was growing up, but it really became a problem when I was in high school. I used to get uti's when I was a kid so my doctor told me to stop taking bubble baths. It seems that throughout my life baths were always a problem. As I got older I stopped taking baths, but eventually after getting older and more stressed out I started getting back into taking baths to relax. I'd always get a yeast infect a day or two after and get a flare up of pain. Maybe this is all connected to bubble baths? Who knows... If your children do take bubble baths I do suggest having them take showers from now on. See if theres an improvement after a week or so. Also try unscented soaps and detergents, the perfumes from the soaps may be irritating them. I'm sorry that some of you have children going through this. It's hard going through this as an adult let alone a child. I'll keep you and you're children in my thoughts and prayers! Hope this helps!

-Jen

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Re: Does anyone know of children who have vulvodynia?

Post  Loulou on Sun Apr 14, 2013 7:01 am

Hi Shamiton

I'm so sorry that you're daughter is suffering - hopefully advice and info you get here and through your docs will find a cause and treatment for her. From what you say it certainly sounds like pelvic floor dysfunction. I don't know how clued up ped gynes are about that??? but if you have no joy with that route try a womens health physio as they will definitely know about pelvic floor.

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