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» Struggling
Yesterday at 3:19 am by doublej

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Wed Dec 13, 2017 5:17 pm by Katiej

» Amitriptyline Success and new-found love
Mon Dec 11, 2017 2:47 am by hannah22

» Went Away and Came Back
Sun Dec 10, 2017 8:48 pm by lindsey_taylor

» Somebody please help me...
Sat Dec 09, 2017 5:46 pm by PainBlogger

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 09, 2017 4:40 pm by mary jane

» 7 years later and life looks bleak :(
Thu Dec 07, 2017 12:37 am by sarisbaris

» Laser or Botox Injections for treating vulvodynia
Wed Dec 06, 2017 6:04 am by sarisbaris

» difficult to treat vaginal infections, un-understanding docotrs
Wed Dec 06, 2017 2:52 am by RainyShay77

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 4

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 3

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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: 4

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


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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