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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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


How do you deal?

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How do you deal?

Post  Micrm on Sun Apr 20, 2014 8:17 am

I am in my 20s, a virgin and am completely overwhelmed with the thought that I may never have sex and therefore never have a functional relationship with a guy. How do you deal with this? I am rollercoastering between blocking out the thoughts and pretending everything is fine and completely breaking down and honestly not seeing a point to living.
Any help?

Micrm

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Re: How do you deal?

Post  alessandria on Mon Apr 21, 2014 2:31 am

We all deal in our own ways, I think. Many people on this forum do have great relationships with their significant others, and find ways to be sexual and intimate despite vulvodynia. I'm also in my twenties, and actually was fortunate to have lived for a while without vulvodynia. When it started and it became clear it wasn't going away, I originally was devastated about the idea of not being in a normal relationship ever again. I am in no pain anymore, but vulvodynia caused me to really redefine my life and my goals in a way that was ultimately positive. I have discovered that by following my passions in my career and by making better friends than I ever have before, I became happier than I ever had been before any of this even started. Even though my pain is in remission, I still have little to no interest in dating, and it's because I've realized how wonderfully fulfilling life can be without a boyfriend and without sex, even though those had been so central to my life before.

Think about it this way: there are countless paths to happiness and fulfillment, and ANY of those are valid. Relationships are an easy one for people to get. But how about a deeply fulfilling career doing what you love? Or learning everything there is to know about the things you're passionate about? Having friends to explore the city and world with, and sculpting memories of new adventures? Being in your twenties is actually an awesome time to be single, try not to let the societal notions that you need to have a boyfriend and you need to have sex get you down. It's just an easy way to be happy, but honestly, it's far from the only one. Do some soul searching as to what you love, and chase after your dreams -- it feels a thousand times better than a relationship ever has, trust me. Smile You will be okay, do not despair. I'm always here by PM, if you want to talk.

alessandria

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Re: How do you deal?

Post  Micrm on Mon Apr 21, 2014 3:05 am

Thank you so much for the reply. It gives me hope and I'm sure I will be contacting you. If I may ask, what did you do to get rid of your pain?

Micrm

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Re: How do you deal?

Post  alessandria on Mon Apr 21, 2014 4:05 am

I think much like everyone else with vulvodynia, I tried a million different things. In brief, what I really thought the biggest things were:

1) Changing my diet and lifestyle: I became much more physically active, and just went to eating healthier foods (lots of vegetables, lean meat, less processed and refined stuff).

2) Changing clothing and cleaning: I honestly wore a lot of ultra tight jeans and lacy/synthetic panties before this all started, and continued to do so for a while. I only wear 100% cotton panties now, and don't wear anything that has any potential to chafe or compress the area. It's more important to be comfortable than to squeeze into the size 2 jeans that don't really fit. Smile I also stopped having sex, and did my best to stop irritating the area. Water is all you need to clean your genital region, soaps can and will irritate you if chemical sensitivity contributes to your pain. (Also, hypoallergenic laundry detergent is a good idea!)

3) This is by far the biggest one: I started doing physical therapy with a pelvic floor specialist. She was able to figure out weak muscle groups and postural issues throughout my body that were all contributing to increased pressure and dysfunction of my pelvic floor. The exercises we did together included a combination of core strengthening and determining how to walk/sit/move, and reacclimatizing my brain to equating a touch in my vestibule as simply being touch, rather than scary and painful. We also worked with dilators, and have gone from barely being able to tolerate the smallest one, to the largest one no longer causing pain. I cannot begin to tell you how wonderful a well-trained physical therapist can be in helping with vulvodynia, and especially in younger women, it seems to have pretty good success rates.

(This is very abridged, but I'm happy to give more specifics!)

alessandria

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Re: How do you deal?

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