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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


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

suffering in silence?

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suffering in silence?

Post  missnik1 on Mon Jan 09, 2012 8:59 pm

i feel like ive been suffering in silence for the past couple of years. i have trouble opening up about my issues..my moods definitely reflect my pain though. but no one around me seems to understand because they dont know what im struggling with on a daily basis. i could use some support from others in my same situation, i just turned 23 have had vulvodynia for past 2 years. im also in a long term relationship that is heading south fast thanks to the detrimental effects of this frustrting disorder! i need something to be hopeful about , to look forwrd to, new hope i guess. ive tried seveeral treatments with no relief and im sick and tired of making doctor appointment aftr apointment. i dont have the best of insurances (just state). so i feel like im not getting the best of care either. like my problems are getting brushed aside. i need tips on how to find a good doctor and how to make the most out of my appointments. i get anxious beforehand and feel like i leave a lot of things out during our discussion. and just leave there not feeling any better about myself. how do i open up and make it sound as serious as it really is? i want the doctor to understand my concerns and my pain.


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Re: suffering in silence?

Post  Sarah001 on Tue Jan 10, 2012 7:56 pm

Write it down if you forget stuff then you have the paper as a reminder and a distraction to look at if you struggle to open up. I can't help with the insurance issues becuase I'm in the UK so I don't fully understand it but don't let them fob you off, write it down so you get everything out in the appointment.

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Re: suffering in silence?

Post  ButterflyLiz on Wed Jan 11, 2012 8:06 pm

I second Sarah’s suggestion; I get nervous & forget things too and taking along notes for the doctor is a brilliant way to get around this. If you look at my post on another thread here: http://www.vulvodyniasupportforum.com/t648-my-belated-story you can see the layout I use. I take two copies along to appointments; one to refer to myself and one the doctor can keep in my file. Don’t be afraid to include the psychological impact this condition has had on you. I hope reading around the forum has helped you to feel less alone. There are lots of us out there! x

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Re: suffering in silence?

Post  unga on Fri Feb 17, 2012 1:48 am

hello, I totally understand what you're feeling, after 3 years I have just found a doctor who is understanding and exploring various treatment methods with me. This happened because I pretty much had a breakdown at the reception of the doctors surgery and the receptionist who had seen me there often told me there was a new doctor at the surgery who she thought would be hepful, and she was...this was a stroke of luck, but it shows that they do happen. My advice to you, as some other people have said, is write everything down and then make sure you say it, it's easy to get distracted or to belittle your experience... do not do this, this is a serious situation that affects all facets of your life...tell them everything that has been affected. I hesitate to write this but I have found male doctors to be unhelpful (this is only my experience I am not at all suggesting that a male doctor could not be helpful; sadly one of the ones I saw insinuated that I didn't know how to have intercourse properly, if I wasn't so offended and embarrassed I probably would have punched him), and the most helpful doctors have been young women. I think just being calm and making sure you say everything you want to say is important. best of luck to you Xx


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Re: suffering in silence?

Post  noni on Fri Feb 17, 2012 3:13 am

Hey Miss!

Your dark feelings are normal with this condition. We've all been there.

Have a look around and read about us. We're like sisters on here.


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Re: suffering in silence?

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