Does anyone know of children who have vulvodynia?

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

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

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

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

x

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

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

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. sorry and hope you girls find answers soon!

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

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.

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!

Where do you live

I'm in Scotland Alana

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

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

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.

Hi, thanks for your replies.

Yes I stopped bubble baths when my daughter started having problems, previously I've only ever used natural and dermal type bubble baths anyway but she has been using Dermal type creams from our GP and plain water to wash with for the past few months. I also make sure she showers off after being in the bath when she's washed her hair and I wash all of her clothes in non bio eco washing powders.

I have spoken with a good friend who is a trained Physio, and is also a Cranio Sacral and Visceral (Soft Tissue) therapist. Funnily enough she has just been on a course learning more about Nerve pain problems, and was able to ask questions specifically relating to my daughter! I trust her completely, as does my daughter and she is going to do some work on her but taking it really slowly so as not to chance irritating things even more.

I have everything crossed that she may be able to help! Will keep you posted x