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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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

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 …

Comments: 0

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


Looking for women to talk about their experiences

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Looking for women to talk about their experiences

Post  ellie12 on Fri May 17, 2013 12:26 pm

Hi there

I am a freelance journalist and vulvodynia sufferer and I am looking to write a long feature about the condition to pitch to womens magazines. When I first began to experience symptoms aged 19, I found it very difficult to get a diagnosis from doctors and had never heard of the condition myself. I would like to help young women like I was with their diagnosis by explaining the condition fully in an article.

I need some case studies - although I do already know some other sufferers who I will be interviewing. These people could be young women, post childbirth sufferers and post menopause sufferers. I want stories from people who's condition has been caused by all manner of things. I also need to talk to experts and support group members if anyone would be willing to discuss the effect that emotional support has on sufferers. Please do let me know if you would be interested in helping me out with an interview - I am available over Skype, email or phone at any time. My email address is eleanorfrancesslee at gmail dot com if you'd like to get in touch.

Best wishes,

Ellie Slee

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Hello

Post  msginayorke on Sat May 18, 2013 1:20 pm

I would love to share my experience in order to help others, how do I get in contact with you?

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Re: Looking for women to talk about their experiences

Post  ellie12 on Sat May 18, 2013 4:06 pm

I've sent you a private message Smile

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Re: Looking for women to talk about their experiences

Post  msginayorke on Sat May 18, 2013 4:22 pm

I sent you one back, let me know if you didn't get it!

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Pain Down Under

Post  Melbourne lyn on Wed Jun 05, 2013 6:45 am

Hi, my name is Lyn and I live in Australia. I am 60, a fitness fanatic and a surviver of sexual abuse. The discomfort began less than a year ago and has made my anxiety and depression much worse. For the last couple of weeks I have tried managing without any exercise at the recomendation of friends to no avail but half a sedative three times a day does seem to be helping. I have seen a phsyiotherapist, a psychologist, a gyno and a pain specialist (plus others). They all seem to agree that lowering my stress would help but that is easier said than done. The Royal Women's hospital in Melbourne is working on the issue for young women but the post-menopausal women are not being included in the trials at this stage. The pain has reached the level of acid or broken glass and is making my life a misery but the sedative is helping although I worry about my driving reaction time. The internet seems to be almost the only place I can find people who have heard of the condition which again makes things more difficult. An ointment made from coconut oil and shea butter combined with some soothing essential oils that my friend has put together seems to be helping me and doesn't stain my clothes which is also beneficial. I would love to hear from others with their ideas on the subject and am happy to take part in your article if you would like my input. I look forward to hearing from you, best wishes, Lyn.

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Melbourn lyn

Post  BpCookie on Thu Jun 06, 2013 6:39 pm

Lyn, You said that your taking a sedative, what is the name of the medication? I have vulva lichen simplex chronicus which causes burning pain, which in turn has caused depression. I take Lorazepam once or twice a day, just to calm me down. Also I have heard good things about coco nut oil, I think Im gonna try it.

take care

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Re: Looking for women to talk about their experiences

Post  Alana3 on Thu Jun 06, 2013 8:34 pm

Be careful with coconut oil, it has the ability to cause infection and yeast because it traps bacteria in and won't let your vagina "breathe" normally. Which can cause BV, yeast, etc etc. Not fun! And if you ingest it, very high in calories and can cuase you to break out. Just be aware of what you're putting where. It seems harmless, but in reality, can cause all other problems you might not want to play with.

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Re: Looking for women to talk about their experiences

Post  BpCookie on Thu Jun 06, 2013 9:24 pm

Hi Alana Sweetie, Oh no, I have enough problems with YI and BI. Thanks for the heads up. I use A and D ointment. For some reason the A and D ointment makes my vulva feel a bit better and protects it from the darn sweat and any discharge I may have. My Gyno told me to use it, Ive used it for two years now, I hope its not gonna cause me any problems. uuugggghhh All I need is more problems with my burning bush, with Mrs. DoubtFire, with Vagisorous......I could go on and on. lol
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Re: Looking for women to talk about their experiences

Post  Alana3 on Thu Jun 06, 2013 11:50 pm

Yeah ew its an oil probably not the best thing to put there

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Re: Looking for women to talk about their experiences

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