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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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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


My story- a long road to recovery.

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My story- a long road to recovery.

Post  jen007 on Mon Nov 19, 2012 2:14 pm

Hi Ladies!
I've been on the forum for a few weeks and I figured it was my turn to tell my story.

I've had vulvodynia for about 5 years now. It all started when I had tried to have sex. The pain was so unbearable...the only way for me to properly describe it is a sharp pain....like a hot knife made of sand paper was inserted into my vagina. Every time we had tried to have sex I'd have to run to the bathroom and take a warm bath to try to sooth the pain. This pain kept me from fully giving myself to my long term boyfriend. At the time I just thought I was too chicken to have sex, since I knew that sex was supposed to hurt the first time. After we tried with no success I'd cry...every time. I didn't understand why I couldn't just suck up the pain and get the first time over with. After trying about 5 times I started thinking this pain that I was feeling couldn't be normal. If sex had hurt that bad at first I don't think anyone would ever do it. So finally I scheduled an appointment with a local gyno. She checked me and told me there was nothing wrong, that I was healthy down there. I had explained to her that I had been having chronic yeast infections. I mean I had them ALL the time... and they were so painful. She then took a swab of the inside of my vagina, which felt just as painful as me trying to have sex, to test me for bacteria. She called me a few days later saying I had a regular yeast infection, but since I was experiencing pain she gave me a stronger antibiotic. BIG MISTAKE. After a few weeks of this doctors antibiotic I went on to finding another doctor since the other ones treatments never worked. I found a good womens internal specialist in a local hospital. After giving her my records from the last doctor she saw the medication I was prescribed. She explained to me that the antibiotic was for Mensa...a form of staff infection...something that would never have help me with the symptoms I was experiencing. I was so mad.

After all that the internal specialist helped me a lot. She wasn't sure, but she told me she thought I had vulvodynia. When she explained what it was to me it made sense for how I was feeling. I was relieved that I had a diagnosis, but so completely depressed about the entire situation. She put me on topical and oral gabapentin. It didn't really do much for me...so I had to try to find another doctor. So at this point its been 3 years, 2 doctors, and no proper diagnosis. I kept trying, for about a year, to find a new specialist in this area. I couldn't find anyone near me that specialized in vulvodynia. Finally I was suggested by a family member to call another local hospital. Since I had a little luck at one maybe I'll have more in another. So I called and out of pure chance they had a specialist. The hospital had a maternity center and gyno in one. They had 2 specialists who specialize in vulvodynia. I made an appointment right away an began different treatments. She had put me on amitriptyline and another compund cream along with 5% lidocaine cream. Nothing helped much. The amitriptyline helped a little once I got to a higher dose, but for some reason it made me loose about 10 pounds. Before taking the amitriptyline I was 120 pounds...After I was about 105 106 pounds and have continued to stay at that weight. My doctor told me if anything I should've gained weight, but it had an opposite affect on me.

After none of her treatments worked she talked to me about surgery. It was a last resort kind of thing. I had nothing left to do at that point. I could've done pelvic floor therapy, but my doctor told me that in the long run it would probably not help me. Now we were on the search for a proper surgeon. There was one in the hospital that had examined me, but he hadn't done enough surgeries and didn't feel comfortable operating on me. I had done so research online and found a book When Sex Hurts by doctor Andrew Goldstein. After reading it I knew I wanted him to be the one to do it. I brought the book to my current doctor and she said she'd try, but he's a hard guy to get a hold of. Somehow..again by chance...she went to a vulvodynia seminar and doctor Andrew Goldstein was the head speaker. She spoke to him after and he gave me a recommendation! After a few weeks I went in for an examination. He told me that I have PVD... Provoked Vestibuledynia. He said it was very localized and that a full vestibulectomy should fix me right up. So I scheduled the surgery. (I did a lot of research on the topic of surgery and found it was the best option for me.).

I had my surgery on July 6, 2012 at 10 am. Its now been 4 months and I've been feeling minimal pain. I still have a sore spot or two, but nothing like it used to be. Plus I was finally able to have sex! It wasn't pain free, but it will get better over time I'm sure. I'm still not fully healed yet...It take about 8 months to a year to be fully healed from surgery. So was the vestibulectomy a success? So far, yes it has! I have one painful area, but with dilators It should subdue.

If anyone has questions about anything please do ask! Also If anyone want details about the surgery and recovery I'd be happy to tell!

-Jen


Last edited by jen007 on Mon Nov 19, 2012 2:15 pm; edited 1 time in total (Reason for editing : spelling)

jen007

Posts : 151
Join date : 2012-11-05
Age : 24
Location : U.S.A

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