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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

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: 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


Provoked Vestibulodynia & Pelvic Floor Hypertonicity

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Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  LILY_ on Mon Feb 11, 2013 9:17 pm

Hi Everyone.

I'm 21 and have had provoked vestibulodynia since I was 15, and now I'm 21. I discovered something was up when I was uncomfortable wearing tampons. Over the years, I developed pelvic floor hypertonicity which I believe caused me to have urinary problems (I have trouble at times urinating and getting a constant stream going, even when I really have to go). My urethra also has provoked pain as well, but I went to a urologist who performed a cystoscopy on me, and found nothing physically wrong with it.

My treatments have involved pelvic floor therapy and dilator work, topical gabapentin cream, and a very low dosage of nortriptyline. Sometimes in combination, sometimes alone. I'll admit that I am not the best with sticking with something, as I become very impatient, so I tend to give up maybe a little more easily than I should. The nortriptyline definitely helped my muscles to become more relaxed, but it just made me feel very sluggish and tired during the day, and I could barely wake up some mornings.

I'm getting to the point of my life, as a 22 year old, who wants to have a normal love and sex life. I've never had a real boyfriend before because I don't date. And I'm not quite sure how to. I live in NYC so if anyone would ever want to meet up and get coffee, and talk about all our experiences, I would very much love to do that! Feel free to message me if you have a similar condition to mine as well and if you have had the vestibulectomy surgery. Lately I've really been thinking about heading down that route.

LILY_

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  jen007 on Mon Feb 11, 2013 10:34 pm

Hi LILY_,

I also have PVD. Not fun :[. I've had PVD since I was about 16 or 17...I'm now 20. I had a vesibulectomy in New York this past July. I was sick of trying medications, creams and antibiotics. It was getting to be to overwhelming. I had pretty much tried everything accept for physical therapy. My doctor told me in the end it wouldn't help me long term. My muscles were so tight for so long I don't think physical therapy would've ever worked. I'm thinking about going to pt eventually during my summer break from college. My surgery was pretty much a success, but sex hasn't been all that great. My boyfriend and I are new to the whole thing so it's a work in progress, but at least now it's possible.

Let me know if you have any questions about the surgery, I'd love to give you advice!

-Jen

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  raquelll on Wed Feb 20, 2013 6:06 am

It's good to know that there are other people with the same thing I have that are considering getting/have gotten surgery. I'm just not convinced that this can be solved through physical therapy. Yes, the muscles are tight, but they are tight because SEX FEELS LIKE DAGGERS haha and that causes major stress in all areas of life. I feel like I can't even attempt a relationship until I get this sorted out.
Best of luck, keep us posted!

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  jen007 on Wed Feb 20, 2013 2:01 pm

Hi raquelll,

I had considered physical therapy for a while, since that was my last option other than surgery. After my gyno explained what they do in pt I decided against it. She also advised me that in the long run it wouldn't cure me or anything. So I went through with surgery and it was the best thing I ever did! It was scary, but now I'm pain free and able to have sex, which is a complete God send. I thought for a long time I'd never have a fulfilling relationship or ever have children in the future, but now anything is possible. All the pain is gone, the stress the sadness everything. I wish it didn't have to come to surgery to get this pain to go away, but right now it's pills, injections, therapy or surgery.

-Jen


Last edited by jen007 on Wed Feb 20, 2013 2:02 pm; edited 1 time in total (Reason for editing : spelling error)

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  Tyger on Sat Feb 23, 2013 3:50 am

I also have PVD I believe - is that when it's only provoked ie. only during penetration/sex and only internal?

I have suffered for along time now, around 10 years. I was actually turned away from the best pelvic floor therapist here in Melbourne, AU because he said the skin inside was inflamed or irritated and he couldn't manipulate the muscles properly. So that really makes me thing that for our cases, PT is secondary, if required at all. The "hurts like daggers" part is the first part to solve!

I have tried things like low-dose antidepressants for nerve pain, antifungals etc, to no avail. Pills just ain't working for me. I really think that surgery might be the best option now... but I'm a little scared of it and also not sure if I'm a candidate? Are most PVD sufferers candidates for vestibulectomy's?

Thanks for your experiences, they've helped cement my decision.

Tyger

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

Post  jen007 on Sat Feb 23, 2013 4:14 am

Hi Tyger,

I too have/ had PVD. I say had because since surgery I really don't have issues anymore...just occasionally. And yes, PVD is provoked pain and it can be internal. In my case it was internal and upon insertion it hurt like hell. Like I said I was going to try physical therapy, but my gyno advised me that it wouldn't be the best option for me since Q tips hurt in there...how could I even stand a finger or 2?? Or what ever they decide to put in you...I know I couldn't have put a dilator in there back then. I would say that women who have PVD are the best candidates for surgery. If the pain is localized it's easy for the surgeon to remove. Before deciding to go through with surgery I really did my research. The most important thing to do is find the right doctor/ surgeon. I would say if they haven't done at least 100 surgeries they wouldn't be the best to use. You want someone with a lot of experience. Plus the surgery is very expensive and usually isn't covered by insurance. But don't let the cost keep you from doing it if you choose to. Your happiness and sex life are worth much more than money and you need those to feel normal.

If you need any more information on surgery please feel free to ask!

-Jen

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Re: Provoked Vestibulodynia & Pelvic Floor Hypertonicity

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