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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


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

My 7-month quest so far...

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My 7-month quest so far...

Post  Julie on Wed Jul 28, 2010 11:18 pm

I never thought I would be so emotionally drained and distraught as a result of a gynecological issue!

In December of 2009, I started having some uncomfortable itching and pain, and I visited a gynecologist who performed some cultures and diagnosed me with bacterial vaginosis (BV). I was prescribed a gel insert which didn't fully work, so I was then given a pill, which cleared up all of the symptoms -- except a bit of the pain. I found that over the next few weeks, sex with my boyfriend (whom I have been dating now for over 2 years... quite an understanding guy, thank goodness) was becoming more and more uncomfortable. I became more irritated (physically AND mentally!) as time wore on, and in March, I saw another gynecologist. He first suggested I try an over-the-counter hydrocortisone cream -- which, predictably, failed -- and then gave me a prescription form (i.e. slightly stronger), which still did nothing. My cultures and tests all came back normal -- no infections, no STDs, normal pap smear -- so his last move was to perform a biopsy on the vulvar skin to check for any unlikely (but scary) possibilities.

Of course, the biopsy came back all clear, and I was told to try the hydrocortisone cream once again.

At this point, I was not able to have any sex at all, and even after the biopsied spot healed, my overall irritation was so severe that I finally had to stop using tampons. The bits of time before, during, and after my period seriously exacerbated the situation, and my frustration grew. I saw one more doctor in June, who prescribed me the strongest steroidal cream he could think of -- to no avail.

At this point, my emotions were shot. I had become so discouraged and resigned myself to a sexless, uncomfortable life. I hated thinking such dramatic things, but I seriously (albeit VERY briefly) considered the pros of having a hysterectomy (no more periods, no more hormonal surges, etc.), but I wanted to have children first, so I thought...hey, IVF!... I could have a child via C-section and then get my tubes tied, and at least remove some of the issue. Obviously a ridiculous notion, but the frustration ran that deep.

I also began to experience an attack on my sense of womanhood that I never fathomed before. I am not particularly into feminism and I don't often think very deeply about gender norms, but here I was, rendered unable to be intimate with my boyfriend, unable to be comfortable during my period, and in pain while I exercised, used toilet paper, wore tight clothing/thongs, and sometimes when I just WALKED... I felt hopeless. I felt incomplete.

A lot of research led me to the term "vulvodynia" -- chronic vulvar pain -- and FINALLY, the last gynecologist I had seen mentioned the word to me as he referred me to another doctor in his practice, a woman who has been researching the condition. Merely hearing him speak that magic word lifted my spirits!

I visited this new doctor a week ago. She changed my entire regimen -- new detergent, new soap, different pads...everything to cut down on excess irritation. I asked to be put on Seasonique, a birth control on which you only get your periods every 3 months (I never felt comfortable doing this before, but once my periods became living embodiments of hell, I didn't think twice!). She also did some cultures and found that there was some sort of yeast present, so I was put on Diflucan, 6 pills, once a week.

I am still just as discouraged as I was before... my libido has hit rock-bottom and I feel that I cannot become as close to my boyfriend as I did before (although this is most DEFINITELY a testament to our bond, as a lesser person would not have wanted to put up with a dearth of sex... and I know from experience); my moods align almost perfectly with the degree of pain I am in, to the point where I just want to curl up and do nothing, see no one; and I am seriously doubting the existence of any sort of solution -- and, by extrapolation, my future as a woman/girlfriend/wife/normal human -- but at least I am getting somewhere.

I am about to pursue a master's degree in public health, starting next month, and my goal after that is to get a PhD in psychology. At this point, I've had some very interesting conversations with my boyfriend about dissertation ideas, and we converged on this working title from which to start -- "Sexual Dysfunctions and the Psychology of Femininity."

I hope to speak with people who have gone through similar issues, and to make a difference in the field regardless of my success or lack thereof. I have to remain hopeful!



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Post  Julie on Thu Jul 29, 2010 2:22 pm

No matter how positive I try to be, it falls back on me and leaves me so depressed. bleh!


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Re: My 7-month quest so far...

Post  naomi on Thu Jul 29, 2010 4:00 pm

I can totally relate to you hun, seems like it came out of my mouth and head! Like many of us ladies on here Sad Its such a struggle everyday to even get out of bed, let alone try and lead a happy and fulfilling life etc etc etc

All I know is, there might not be any quick, simple answers out there but I know there is support and friendship. I dont know what I would have done if I hadnt found a site like this. It is the isolation that gets me, none of my friends or family have ever experienced anything along these lines or to this degree. I wake up some days thinking "whats the point?"...and that scares me as I have never been that type of person to be so negative and pessimistic. But I havent been given any hope, so i have nothing to go by.

We've got to get some answers soon. I dont believe there hasnt been any advances on research or treatment. WE'LL FRIGGIN GET THERE!!!! (hey that was a bit of positivity there i think!?!)

I'll write some more later Im afraid I'm totally wiped out after crappy tribunal earlier.

Love to you all

Nai xxxxxxx


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Re: My 7-month quest so far...

Post  Julie on Thu Jul 29, 2010 5:45 pm

Thanks for the response =) I hadn't until now tried to reach out for support, and the few friends with whom I've talked really can't get a feel for what's going on, so it is REALLY reassuring. Just made myself get up and go walk a few miles at the gym while reading a science magazine (nerdy, I know!) to get my mind off of things.


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Re: My 7-month quest so far...

Post  Sebby (Admin) on Thu Jul 29, 2010 7:53 pm

Welcome Julie!

I can totally relate to everything you said. I have been battling with doctors to take me seriously and have used every friggin cream under the sun! I was living on Hydrocortisone cream and canestan at one point.

At present I am due to see a pain clinic on Monday and just hope when I say the word Vulvodynia I dont get a blank stare! Shocked like ive just walked in with a chicken attached to my face lol

I also feel its robbed me of feeling like a 'woman' I felt like I should just run away to a nunnery and be done with it!

Im still trying to fight on so dont give up, keep posting and let us know how u get on.

Im hoping to try and go down the whole physcial therapy - pelvic floor road.

Take care and keep us updated


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Re: My 7-month quest so far...

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