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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


another website!

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another website!

Post  naomi on Mon Aug 02, 2010 8:17 pm

http://www.vulvodyniasupport.com/guest1.html


"Vulvodynia interferes with daily functioning, such as sitting walking and most other physical activity. It often affects one's ability to engage in sexual activity. It can impair one's ability to work, and participate in a social life. These limitations often lead to depression and thoughts of suicide.

We need ongoing and multiple approached researchers to learn the underlying cause of Vulvodynia. We need proper care and medications that help control the pain and discomfort, that helps all forms of Vulvodynia patients to cope with their daily lives. We need dedicated professionals to start and continue researching this disease until a cure is found. We need compassionate professionals to join in the fight against the ignorance that engulfs the sufferers of the disease. We need dedicated people who are committed to figuring out what causes Vulvodynia, and how to treat and cure Vulvodynia.

It has been over 100 years since the "discovery" of Vulvodynia and yet Vulvodynia is virtually ignored by the medical and research community. It is time for the medical and research community to step into the 21st Century and recognize and legitimize our disease and pain by forming a national research foundation that will continually study this disease until a cure is found. It is time to stop our suffering!"

Lauren Kunis New York City USA



Here-here! I completely agree Smile

could we not go public and DEMAND more research into this area instead of researching into...oh I dont know I cant think of anything witty right now!!! Very Happy
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Re: another website!

Post  Sarah001 on Mon Aug 02, 2010 8:30 pm

I'm not quite sure if that website is still active, the guestbooks are from years ago and the link to the recent one doesn't work on my computer at least. The most recent guestbook seems to be from 2002 so it looks like the campaign with the open letter was a while ago and clearly didn't help or we wouldn't all be wondering how to help ourselves now!!
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Re: another website!

Post  maggie on Mon Aug 02, 2010 8:34 pm

100 years since the discovery of vuivodynia, yet the GP's have never heard of it, i can't belive that it's been around that long.

maggie x

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Re: another website!

Post  naomi on Mon Aug 02, 2010 8:38 pm

DOH!

Well I have plenty of time on my hands to keep plodding along with the research and pestering specialists now I have lost my job through this!!!!!! grrrrrrr

On my good days I feel up to it so will continue with my plodding. Hopefully will uncover some answers for us

xxx

these support groups might still be alive...maybe!
http://www.vulvodyniasupport.com/support.html


Last edited by naomi on Mon Aug 02, 2010 8:42 pm; edited 1 time in total
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Re: another website!

Post  maggie on Mon Aug 02, 2010 8:41 pm



Well done you, keep up the good work. thanks for info.

maggie

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Re: another website!

Post  naomi on Mon Aug 02, 2010 9:45 pm

RIGHT! try this link folks...

http://vulvodyniasupport.com/
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Re: another website!

Post  Sarah001 on Tue Aug 03, 2010 11:31 am

I applied to join the yahoo group for vulvodynia and finally got accepted after a few weeks only to find I'd stupidly forgotten my yahoo account details and couldn't sign in! I've reapplied but heard nothing yet strangely I'm receiving emails from some members of that group in my email account?! Some seem to be spam and others seem to be genuine asking for advice (which I don't really have). I'm not totally sure it isn't the same stuff that's on Dr Glazer's site in the guestbooks, I'll have to wait and see if they will accept me again and perhaps I can remember my details this time! Embarassed
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Re: another website!

Post  Sebby (Admin) on Tue Aug 03, 2010 11:40 am


I did the same thing Sarah! I applied for the yahoo group but never got nothing back and then forgot my log in details! Oh well lol

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Re: another website!

Post  Sarah001 on Tue Aug 03, 2010 11:57 am

I'm pleased I'm not the only airhead!! Laughing I made a point of writing them down this time but as they haven't replied I probably won't need them now I've got them! Rolling Eyes
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Re: another website!

Post  Sebby (Admin) on Wed Aug 04, 2010 9:20 pm


Why dont the plonkers reply! Question lol
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Re: another website!

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