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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 3

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12


I'm so glad I found this forum, because nothing else seems to have worked!

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I'm so glad I found this forum, because nothing else seems to have worked!

Post  katerebecca on Fri Jun 10, 2011 7:58 am

Hi, I'm a Sydney girl who has been very unwell for about 15 months now. I've always had gyne problems, which turned out a few years ago to be endometriosis, which my Dr operated on successfully. This whole saga started last year with what I thought was thrush which wouldn't go away, and I was given boric acid for it, and then I seemed to get what I thought was a UTI, and so went on antibiotics, but the pain got worse so it was assumed that I had a pelvic inflammatory infection, and so was given even stronger medication. Pain continued to worsen and so after xrays and ultrasounds I ended up in hospital for a laparoscopy, but my Dr said my pelvis was absolutely fine. It must be, he said, my bowel. So I waited for my appointment with a gastroenterologist, who said there was nothing wrong with my bowel. And so then I waited for four months for an appointment with a vulval gyne, who spent months trying to diagnose me, working down the list of possibilities with meds (flucanozole, cortisone, endep) and physio until she too said she'd run out of ideas. And so I'm now waiting to see a pain specialist who I'm really hoping can do something, because as it is I cannot work, walk, sit or drive comfortably, have sex or generally do anything much. Finding this forum has been amazing as I at least know that I'm not the only one with a mystery-illness and that there is some hope of finding relief. Thanks ladies for sharing!

katerebecca

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  noni on Fri Jun 10, 2011 9:42 pm

Hey girl,

Im so glad you found this amazing forum! You can thank the wonderful Sebby for that Smile

Basically, for a lot of us, we feel totally alone in this. Either doctors tell us were nuts, dismiss us, or totally give up on us. Thats why you just need to be extremely emotionally and mentally strong -- because, physically you may feel like crap. Plus, most people dont get it. This isnt regular pain, its nerve pain. It has a mind of its own.

God bless Mouse for suggesting mindfulness meditation...although im not there totally yet...one thing stuck out in the mindfulness CD...in this life everyone experiences pain, but suffering is optional. I will try doing that more!

Anyways...I hav ebeen on Amitriptyline...but honestly either its not working anymore or works on and off...hard to tell.

Whatever.

Take care girl!

Noni

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noni

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  Mouse on Sat Jun 11, 2011 3:00 am

Hey hon!

I'm so glad you found us as well. Mostly we have a similar story - a series of Drs who have no bloody idea! Of course vulvodynia means pain in your girl bits so not really a diagnosis if you're lucky enough to get one!

I think a pain clinic is a really good option. Managing the pain is essential.

I'm keen on lifestyle changes as well. Be kind to yourself. Try to get rid of sugar, coffee ... sorry alcohol. Quality sleep is good if you can get it. Relaxing baths if you can. Meditation and therapy are my favourite things. I see a sex therapist (OH MY!!!) she has a few clients with V. Managing all of this is hard work so unloading all your crap is a good idea.

Thanks for the blessing Noni - right back at you Very Happy

Mouse

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  lisa98 on Sat Jun 11, 2011 9:23 am

Welcome to the forum, nice to have another Sydney girl here. Smile

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I am so glad I have found this forum

Post  ria on Sat Jun 11, 2011 1:36 pm


Welcome Lisa there is a vast amount of knowledge from the Ladies on this forum.


Ria Very Happy Very Happy Very Happy Very Happy Very Happy

ria

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  Ozgirl on Sun Jun 12, 2011 11:43 am

Hi there - i am only very new here but got diagnosed with VV ( at 26) years ago after suffering from it since I was a young child. Anyway - I am also from Australia and was wondering if you have been put in touch with Dr Marek Jantos? He is a leading expert in Vulvodynia, based in Adelaide but has clinics in most capital cities ( including Sydney). His diagnosis and then treatment improved my VV by about 80% using biofeedback and dilators ( giving birth improved it the other 15%). Anyway - if you are interested let me know and I can give you his details or you can Google it. Checkout his website www.vulvodynia.com.au or jsut google his name.

Ozgirl

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Marek Jantos

Post  Aussie on Mon Jun 13, 2011 11:50 pm

I also saw Marek and his treatment has also improved my pain by about 80% highly respect this man for his knowledge and understanding. I am still aiming for 100% though!!

Aussie

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  Louise on Tue Jun 14, 2011 11:17 pm

Hi, welcome to the group!

I'm from perth & found this group one night last year when all my V problems started,which was pretty much the same way as yours did. The ladies here are wonderful you should join the private fb group as well, just to let you know my v has improved immensley after numerous dr appt, gyno appts, different creams & physio I found I had to stop using creams (ami etc) altogether as it was only making my situation worse! however everyone is different but change of diet & if you can lighten your stresses somehow (easier said than done when your stressed out in pain, I know) does help...

We are all here for you... Very Happy
xxx

Louise

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  katerebecca on Wed Jun 15, 2011 1:39 am

Thanks everyone so much for the ideas and support-it makes everything a little bit easier. I have been trying madly to quit sugar, but I've always been a sugar fiend and with not much in the way of distraction it's been a bit of a fail. I have managed to cut out alcohol and coffee, mostly, but I think that was easier as I've had very little social life in the past year! Reading stories of people actually getting better is really great, so thanks again for sharing!

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

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