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Yesterday at 11:35 pm by Sparkle

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Yesterday at 12:59 am by yoginimom

» which meds for what?
Yesterday at 12:10 am by yoginimom

» Where are you from?
Wed Oct 29, 2014 7:05 pm by KatieMay

» COCONUT OIL cured me.
Wed Oct 29, 2014 5:12 am by Alana3

» Vulvodynia after hysterectomy
Tue Oct 28, 2014 2:28 pm by yoginimom

» Fibromyalgia & this condition
Tue Oct 28, 2014 12:54 pm by yoginimom

» Yeast free, IC free, Vulvodynia free, Betadine douche finnally kicked it :)
Tue Oct 28, 2014 12:43 pm by yoginimom

which meds for what?

Tue Oct 21, 2014 12:51 pm by yoginimom

I have been reading through this forum and finding a lot of threads that mention various medications, but do not list what they are for. Is there a list of meds anywhere on this forum with a description of what they are for? Or matching certain symptoms with certain meds?

My Dr. has not suggested any meds aside from Fluconzole which is the no name for Diflucan, (a yeast treatment).

Can anyone …

Comments: 7

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: 70

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: 9

Long time sufferer

Sat Oct 25, 2014 3:07 pm by mirror

I'm 34 years old, I've been married for seven years, and we can't have sex because I'm so miserable.  And this has been going on my entire adult life.  Any kind of penetration ranges from extremely uncomfortable to downright excruciating for me.  I don't wear tampons unless I absolutely have to because even inserting a small tampon is awful.  And I can constantly feel it as I wear it, like …

Comments: 3

Would love support

Fri Oct 03, 2014 8:04 am by katn7

I have been living with vulvodynia for a long as I can remember. I didn't get officially diagnosed until I was 17 and it has been getting worse ever since. I am 19 now and unable to have sex with my boyfriend of 4 years. I also suffer from endometriosis since I was in my early teens so I've been living with pelvic pain for a long time now. No one really understands how vulvodynia effects you …

Comments: 18

Vulvar pain documentary!!

Tue Oct 14, 2014 1:42 am by lovingmelon

Hi all,
new to this forum, and boy am I glad to have found it. Just browsing through, it seems like so much good information is being shared.
I wanted to post a link to my IndieGoGo campaign for the documentary I am making. Even if you can't contribute, I'd love it if you'd pass along my link, if you feel so inclined.

EDIT: Just tried to post my link, and I was prohibited. If you'd like to find …

Comments: 2

I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Fri Oct 10, 2014 7:51 am by LeonieFlower

Hi, I'm a new lady here. Found this forum yesterday.

I am 26 and have been suffering with this hell of a disease for 8 years (diagnosed 2006) and it has only gotten worse year after year... I am on pain meds and tricyclic antidepressant (amitriptyline) which isnt helping. I get erratic when taking the meds. I have tried antibiotic creams, lions mane (supplement), zinc oxide, cold packs, …

Comments: 21

Any advice on with amitrytline?

Mon Oct 06, 2014 7:00 pm by Sparkle

Hello,

Anyone tried this in pill form? What's it's like? What side effects have you had? This is next on the list for doc to percribe me for my vestibular vulvadynia but I'm worried about the side effects.

Also did it work with anyone with provoked pain?

Any advice is much appreciated. X



Comments: 13

NEWBIE UNCERTAIN

Wed Aug 20, 2014 8:48 pm by QueenLatifahzw

Hi I am a newbie glad to join your site can already see it going to be much help.
I am 52 years old going through menopause. This has been going on for close to 3 years. It all started when my periods began to be irregular and for the first time in my life I came down with a UTI which was treated with antibiotics but I started to experience frequent urination and burning thereafter not all the …

Comments: 3


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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