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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

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


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

I'm healed

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I'm healed

Post  HopeandFaith on Sun Jun 30, 2013 2:22 am

I'm healed and like so many I'm still confused, grateful but confused. The one thing I can definitely attribute to my healing is my unwillingness to live with vulvodynia.

Its been 3 and a half years of sheer terror. I've been to every place the other women here have (except surgery), begging to live, begging to die, praying for a cure, a miracle, and answer, then praying to die, then not praying at all.

I wish I could give you specific steps to help you heal but I can't really see I got a true miracle, I'm fine but I don't know how it happened. Maybe just time, as I've read from others. Maybe the chiropractor, the accupuncture, the tapping, meditation, yoga, nortrityline, lidocaine gel 5% topical at night, the episiotomy scar massage and stretching of the vulva, the gluten free diet, the B12 and other vitamins. Just writing this is exhausting. Let me tell you what I think I know.

Its started with chronic yeast infections and a dose of monistat 3 day
I was diagnosed with vulvavestibulitis.
Prescribed biofeedback and nortriptyline 5mg, at night, now up to 10mg (i'm scared to stop taking it)
Estrace cream two a day to vulva
I had pain and burning like sitting in acid on both sides of the vulva
Right side pain subsided in three weeks after starting the above.
Left pain subsided notably but did not go away for another year plus
Never had painful sex, in fact sex distracted the pain until it was over then it would be agony
I never had pain at night, once asleep I was pain free - this is a sign that the pain may not be 'real' meaning there is no infection or misaligned back etc, it may be the nerves in the vulva overreacting to earlier chronic infection and sending pain messages to the brain
What I know is that this can really be caused by so many things, there are so many stories of anguish and some of hope.

I used to cry when I woke up because my prayer at nights would be to not wake up. Its been a lonely heartbreaking, relationship eradicating journey through the depths of despair.

If you can, please hold on, please keep trying, through all the disappointment, which just shreds you to pieces - I know, through all the loss and all the fear.

Since I obviously wasn't going to die I became determined to live and to live without pain and I am here someone living without pain.

Love and hope to you all.


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Re: I'm healed

Post  Sarah001 on Sun Jun 30, 2013 11:38 am

I'm really pleased you are painfree again however I want to make sure other women don't get confused by the part about pain at night, the lack of pain at night can still be musculoskeletal as when you lay down it takes the pressure off the muscles that are tight which in turn relieves any nerves affected by them so other ladies reading this please note no pain at night does not rule out misalignment etc. But congratulations and long may it last for you!

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Re: I'm healed

Post  Kathy100 on Tue Jul 02, 2013 2:41 pm

I'll second Sarahs post. I found that through physio that my pelvis is mis-aligned & my left hip / shoulder are twisting forward plus my lower back was compressed which was causing pressure on the nerves and then causing the pain. When I lie down on my back there is no pain as I'm stretched out but on my sides unless I use a pillow between my knees there is pain.


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Re: I'm healed

Post  Delilah1 on Thu Jul 04, 2013 1:48 am

Thank you for sharing your story! It is so encouraging to hear that you are feeling better. Vulvodynia is such a crazy, horrible thing to live with. It is unbelievable to me that so many women have suffered with this for years and the medical community knows so little. I keep telling myself that I will be pain free one day and feel normal again. I have had days recently when the pain/burning has been minimal and I tell myself that is proof that my body is fighting this and winning. Did you notice that your healing started in this way? Was it a gradual healing? I have noticed that I am not quite as dry as I was when the pain was at its worst and the red spots have disappeared on the left side of my labia minora. I think the burning pain is receding but now I am feeling more of a rawness or soreness in the vestibule. I still have the red lines/spots on the right side but I think the tissue in the whole vulvar area is becoming less red and more pink like I used to be some days. I was told to use Crisco to moisturize the skin. Have you ever tried that? I haven't tried it yet. Afraid to put anything on that could set me back. Do you think the Nortriptyline is what stopped the pain burning for you? Are there any things that you noticed changing along the way that made you think you were getting better slowly?


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Re: I'm healed

Post  tinkerbelle2 on Mon Sep 30, 2013 10:23 am

Congratulations! So happy for you!

This is heartwarming to read & gives me hope that all of our pain and irritation CAN go away. Smile

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me too

Post  mushroomvisionlala on Mon Sep 30, 2013 4:02 pm

Im so traumatized by what Ive been thru, years of hell and despair, living a half life cuz of the chronic pain, and shame, its like I have Post Traumatic Shock Syndrome.
I attribute my healing to God too.
Now I have to do what I promised to him, for healing me. (live a good life) be a Good person, etc) had to revamp my views on sex, etc.
I never want a chastisement like this again, ever.


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Re: I'm healed

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