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Today at 12:10 pm by meelie

» relationships/suicidal
Today at 12:06 pm by meelie

» Im a Guy with Issues Similar
Yesterday at 6:55 am by Justin777

» More bad news.Anyone else on here unable to have kids?
Thu Dec 18, 2014 8:53 pm by sailor_moon

» A successful happy marriage with Vulvodynia??
Thu Dec 18, 2014 2:49 am by Alana3

» New to vulvodynia and searching for solutions
Tue Dec 16, 2014 5:46 am by Alana3

» Low oxalate diet?
Tue Dec 16, 2014 5:20 am by Alana3

» Have created a secret facebook group!! Shhhh
Sun Dec 14, 2014 1:58 am by keepsmiling

» Ipl/lazer hair removal bikin line
Sun Dec 14, 2014 1:49 am by keepsmiling

Im a Guy with Issues Similar

Mon Dec 15, 2014 7:17 am by Justin777

Hi girls I recently discovered 'Vulvodynia' last month. How I came across it is ironic. In June of this year 2014 I took a hair loss pill called propecia. Pill designed to stop my hair from falling out. One month in I discovered that my private would struggle to stay turned on. Also orgasm lost feeling. Private has become pretty numb. Very upset over this. They have a website for the few guys who …

Comments: 16

New to vulvodynia and searching for solutions

Sun Dec 07, 2014 10:39 am by justbecca28

Hi,
I am 30 and was just diagnosed with vulvodynia about 6 months ago. Since the first time I had sex, when I was 16, I knew there was something wrong. My bf at the time couldn't even penetrate, and when he finally did, the pain was unbearable. To this day I have never had sex without pain. I didn't even understand that what I was experiencing was not normal until I was probably 20. I thought to …

Comments: 3

Low oxalate diet?

Sun Dec 14, 2014 1:55 am by keepsmiling

I attended a Vulvodynia study day at my local hospital recently and was informed about a low oxalate diet that helps ease vulval pain. Anyone tried and tested this? And does it actually work??

Thanks


Comments: 1

Ipl/lazer hair removal bikin line

Sun Nov 16, 2014 4:58 am by Mary1000

Hiya,

Was wondering if anyone has ever had ipl/lazer hair removal on their bikini line before?

Or if you know if it would effect my vulvadynia.

I'm not in acute stage of it like I was last year. The constant pain stopped from seeing a physio and many other things like coconut oil.also breaking up with my boyfriend so not having sex which caused a lot of emotions as wasn't able too. Still …

Comments: 3

Vulvodynia nerve pain after having baby

Wed Dec 10, 2014 6:33 am by ethome

I recently had my second baby 7 months ago and since then I have had pain at the site where I tore and just inside my vagina. It only really hurt if pressure was applied but I have recently had a steroid and anesthetic injection into the vagina area to help treat this. This has made things so much worse as now I have pain all the time. It throbs and burns constantly. I went back to the gynae who …

Comments: 0

Dermatologist in Melbourne Australia Cured my Vulvodynia

Tue Feb 01, 2011 4:30 pm by angelique

A Dermatologist in Melbourne Australia cured my Vulvodynia, below are the details I hope it helps some of you, as this illness is so debilitating and painful, I nearly went out of my mind with pain.

Contact your doctor and have him organise a referral to a specialist Dermatologist that should be able to help you, if your in Victoria contact, Josephine Yeatman, Dermatologist, 154 Grimshaw St, …

Comments: 22

PAIN FREE WITH DR ROBERT MORSE

Sun Dec 04, 2011 4:19 am by ria

Hello everyone,

I am now pain free no medication. Please look up Dr Robert Morse on youtube he has helped me with my constant pain he is a Naturopathic doctor in America. I did not go and see him I had a telephone consultation, but please feel free to call the clinic advice is there for free can you beleive it Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy

If you need any advice please contact me I …

Comments: 76

New here! Vulvodynia, Interstitial Cystitis, Depression, Sexual Assault

Sun Nov 16, 2014 5:23 am by _Jules_

Hello all, I'm new here and this is my first post. As much as I hate to think of other people having to go through the horrible pain of Vulvodynia, it is of some consolation to read your stories and know we're not alone. It can be so isolating sometimes. There is a lot of hope on this forum and I see that many people have found significant relief. That makes me feel hopeful although I've been …

Comments: 3

Happened So Suddenly

Fri Oct 24, 2014 11:11 pm by ChrisB

Hello... I am becoming desperate. I dont know how much more I can take. This all started back in May. I was having an IBS flare up and found it easier at work to use baby wipes. This had been happening for a few weeks. It was a friday night and I had sex with my guy. Over the weekend I felt irritated but assumed it was from sex. I was also not feeling well so I didnt pay too much …

Comments: 13


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 5:13 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 7:44 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 12:10 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 8:10 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 1:08 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 Thu Apr 11, 2013 11:27 pm

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 Thu Apr 11, 2013 11:58 pm

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 1:46 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 2:37 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 8:54 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 3:35 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 4:22 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 7:39 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 10:20 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 6:01 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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