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» Vestibulectomy
Yesterday at 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

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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

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: 0

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


Found the cure to my vulvodynia

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Found the cure to my vulvodynia

Post  anonymous12345 on Mon Apr 01, 2013 3:57 am

Hi everyone,
First of all, I wanted to express my sympathies with everyone posting on the forum. Vulvodynia takes a huge strain on your life and can change you as a person. I am 21 years old and have been dealing with what was diagnosed as "vulvodynia" for 7 months (I'd like to stress that this is not really a diagnosis but a catch-all term for vulvar pain when doctors can't figure out the cause or don't care to help you figure out the cause. I personally believe there is an underlying cause for everyone's vulvodynia). What a journey it has been. Going from doctor to doctor to find an answer. Interestingly enough, the doctor who found the solution wasn't a gynecologist at all... But a gastroenterologist. She suggested many things, one of them being a milk allergy or lactose intolerance. She had me eliminate dairy from my diet completely. Check all labels because milk/casein/whey/lactose is hidden in many foods that you would never expect! Within 48 hours I noticed a HUGE improvement. And since then, whereas most days I feel 20%, nowadays I feel 90%-100%. I wanted to share my story with everyone, in hopes that I could help another woman escape the misery of the burning, aching, and stinging of vulvodynia. Good luck to everyone, you are in my prayers.

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Re: Found the cure to my vulvodynia

Post  Loulou on Mon Apr 29, 2013 7:02 pm

Hi anonymous12345 - so pleased you found your cure! Isn't vulvodynia a wierd thing. So many different causes. Thanks for sharing your story - it all adds to our knowledge!





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Symptoms

Post  Annie82 on Tue Apr 30, 2013 8:36 am

Hi anonymous12345, what symptoms did you experience? How did it start?

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found the cure

Post  BeeJay on Fri May 03, 2013 1:00 am

I am so interested to hear about the views of your gastroenterologist. I too am lactose intolerant, and have always suspected there was a connection between what I eat, and how I feel down there. Do you take any type of lactase enzymes as suppliments?

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Re: Found the cure to my vulvodynia

Post  anonymous12345 on Mon May 13, 2013 6:43 pm

Hi everyone! Thanks for responding.
Loulou, I was happy to share my story! I am blessed that it is now a happy one.
Annie82, I woke up on my 21st birthday with a terrible burning sensation on my vulva area and my anal area. The burning was very intense. What a way to start your birthday! Throughout the following months, I would get fissures on my vulva and anus and they would take a long time to heal. I would also have this deep burning feeling that would come and go for days at a time. Went from doctor to doctor for 7 months (4 gynocologists, 1 dermatologist) and had no definite answers. Was misdiagnosed many times. One gynocologist tried to tell me I probably had herpes even though my blood tests were all negative, all swabs were negative, and the only partner I ever had was negative. The dermatologist told me I probably had lichen sclerosus after a skin biopsy showing minimal scarring. What I found was that many doctors give you their answer so you will stop coming back, but I wasn't going to give up. So I went to a GI doctor, who I would declare a saint if I could. I seriously owe my happiness to her. I am not bashing all doctors, my dad is one, but I did learn that not all doctors provide the best care. I feel 100% every day, except for the 2 days after my period... The deep burning comes back! But then goes right back away. If this is my only problem for the rest of my life, I consider myself very lucky!
Beejay, the only time I take the enzymes is if I'm eating out and am not 100% sure what is in my food. I also take a daily probiotic. What is strange is that I do not show any other symptoms of lactose intolerance... No stomach ache, gas, diarrhea. Only pain down there!
I am not a religious person, but I pray every night to give thanks that I am now healthy. I also pray for other women to find their cures. Best of luck to you three!

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Question

Post  allforone on Tue May 14, 2013 1:33 am

Anonymous12345--
So glad to hear of your success............I too have been battling this issue for months......I was actually wondering if it could be something I'm eating or drinking. I drink very little milk, but I know there is milk in things you can't imagine.
My question to you is.............did you have any other burning besides your vulva and anus? I have it bad there, however it is also in other areas of my body too.........sometimes legs, feet, arms, lips and tongue. Drives me crazy!!!
It all started in the vulva though and gradually radiated to other areas........I'm beside myself and have went to all kinds of doctors also. Very aggravating!! Ugh!

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Re: Found the cure to my vulvodynia

Post  anonymous12345 on Tue May 14, 2013 6:30 pm

allforone, no I did not experience symptoms elsewhere. My symptoms were all limited to my underwear area. It wasn't just the milk I was drinking (I wasn't drinking that much), but the cheese and butter I was consuming daily as well. Once I cut all that out of my diet, I started feeling better.

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Burning in other areas

Post  Rainy Day on Sun May 19, 2013 11:01 pm

When I flare, I do too sometimes burn in other areas. The way my physio explained it is that one nerve (down there) gets ticked off...and starts communicating with other nerves...and gets them all ticked off. At my worst point, I burned even in my arms, back, boobs, face, etc. At my very worst, i could even focus on my hand...and make IT BURN! It's very much your brain involved...stress...nerves. Since then, my flares pretty much stay in just the legs. And, I am learning to control those flares by reducing anxiety. Anxiety is my trigger. My skin has been sensitive ever since I got V over a year ago. I rub baby oil all over my skin every day...since I feel the slightest bit of dryness. All this has improved though now that I understand a little how this beast operates. So, you aren't the only one that had other burning areas. And, yes, it does get better.

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Re: Found the cure to my vulvodynia

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