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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» 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


A little Hope for 2012

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A little Hope for 2012

Post  esilv on Mon Jan 02, 2012 4:55 pm

I was diagnosed with Vulvodynia in 2005, right before my 24th birthday. Like most people I had never heard of this condition and investigating it online was a really depressing task. So many women suffer and are in pain constantly, and it seemed pretty hopeless. I never joined a forum in the past but I joined one today to tell my story to show that there are happy endings for some of these sufferers.

In 2005, I had just started dating a new guy, and things were better than ever in the bedroom. In the past I had suffered from frequent UTIs and occasional yeast infections, and when our intercourse started being painful, I thought I had another yeast infection. Tried a few days of over the counter treatment, ended up going to my gynecologist because OTC meds for that stuff rarely helped me. My doctor succinctly told me that there was no infection or any other sign of pain, and that she thought I had something called Vulvodynia. It was a condition that had no real known cause or solution. At that point, my pain was mainly during sex but it was severe. For those first few months I couldn't use tampons, and while I did continue to have less frequent sex with my boyfriend, for the first few weeks I was crying most every time, not from pain, but from knowing that this was my future. I was upset because at 24 sex was pretty important to me and to my idea of what a relationship should consist of, and after dating for 4 short months, I couldn't see any reason why the man I was with would want to stick around and deal with such hassle. Sure, I'm great, but there were so many other girls out there who wouldn't start bawling every time things got romantic.

At any rate, I tried a lot of solutions, including elavil, physical therapy, vitamin e oil, good old fashioned ice, acupuncture and even found some relief in a triple x gag gift called 'me so horny' cream that was supposed to turn women on (ya, right) but was essentially icy hot for your lady parts. Most things didn't work. My first run of physical therapy actually did seem to be doing a lot of good, things got much less painful, but then for insurance/cost reasons I had to stop. I would say the first year of my V, there was a lot of up and down as far as pain went, sometimes it was bad, sometimes it was good...definitely felt like a lot of movement. No matter how bad it was, I know I was lucky. It was only during sex, not throughout my normal life, and it was never so bad that I couldn't also enjoy parts of sex, with my patient and still standing by partner. True, there was no more 2nd or third round...I could barely make it through the first round, but I know many women suffered much more. Ice and the icy hot cream helped with soreness afterwards. elavil, vitamin e and acupuncture didn't work for me.

My doctor would recommend other temporary solutions like lidocaine and she had told me that it often goes away just as mysteriously as it appears. I think the first visit, when I was diagnosed, she said "It will probably go away in about 2 or 3 years" which seemed like forever at the time. By 2010, I had stopped trying to find a solution and had just submitted to living my life with V, sex once a week maybe, always a slow and delicate procedure, always with about the same amount of pain (which had leveled off after the first year). My boyfriend and stuck with me for almost 5 years and though I still looked back at our first few months together as the best because they were so easy going and carefree, we had been living a great life otherwise, and decided to marry. Even after 5 years with vulvodynia, it was still a real bummer to have the best wedding day ever and then party til late in the night only to go back to our hotel and try to 'consummate' and in the end, have a pretty unsuccessful time since I was in a lot of pain. Around that time, since I was turning 29, I realized I'd dealt with this for 5 full years and hadn't done much about it in the last 2-3 years so I renewed my efforts with physical therapy and acupuncture.

My doctor told me, quite discouragingly 'Don't bother with those things, it will just go away as it came, usually in 5 to 7 years.' At this point I seemed to remember her telling me 2-3 originally, and I was already at 5, and I simply didn't believe that my life was going to just turn around. I felt like, better to do something that nothing. So I continued for a while and....nothing. This story has gotten really long, so I'll fast forward one year, to about a month before my 30th birthday when suddenly, sex didn't seem like it was as painful...and I could go for longer without having to stop. And I wasn't positive, maybe it was just a fluke, but it seemed to happen again and maybe again. Wait a second, I know we just finished, but can we do it again? Somehow, I don't need to go sit with an icepak over my crotch. It took me about a month to fully accept that things were different, but they were. And so it was. my vulvodynia just sort of...went away.

It's incredible. I don't know how I lived with it for 6 years, but I feel like a new person and I know I never even had it thaaaaat bad. I am sorry to all the women who have to deal with this, especially since it's mostly in silence. I told my mom and sisters and best friends and obviously my boyfriend/now husband, but I really hated having such a painful experience and not being able to properly complain about it. And when it went away I wanted to shout it all up and down Facebook, but obviously, can't do that. I'm not even here to share my excitement; I'm here because I remember being 24 and seeing the most depressing stories ever and thinking there was no hope. Maybe there is for you, just like me! My doctor who was also very excited said that it's unlikely to return for a long period of time...maybe here and there when I'm stress out but for the most part I should be good. I guess she was right before so I'll choose to think positively about the future, but either way I am enjoying the time that I have, and making up for what me and the hubby missed out on in my 20's. Best of luck to all of you, too!


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Re: A little Hope for 2012

Post  ButterflyLiz on Mon Jan 02, 2012 8:00 pm

Hi, thank you so much for sharing your story! I'm so happy for you that your v mysteriously disappeared, that's amazing Smile Though obviously it's still rubbish that you had to go through those 6 years of painful sex. Do you have any theories on what might have changed to make your pain go away? Might it have been your renewed attempts with physical therapy? Anyway, long may it continue for you x
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Re: A little Hope for 2012

Post  Sarah001 on Fri Jan 06, 2012 1:36 pm

That's very good news but like Liz I'd be interested to know if the renewed PT effort might have done the trick? I think you may have posted and gone but if you do come back we'd love to hear more detail!
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