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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

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

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: 4

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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


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?
Hugs
Delilah

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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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