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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22


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!

katerebecca

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

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