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» Vestibulectomy
Yesterday at 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

» 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


I'm new here from Brisbane, recent diagnosis- Vestibulodynia

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I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  keepdreaming on Mon Apr 01, 2013 6:03 am

Hi All,

I am new here and I would really like to get in contact with people from Brisbane, Australia.

I was recently diagnosed (2 months ago) with Provoked Vestibulodynia (Vulvar Vestibulitis) and reactive vaginismus due to the Vestibulodynia, after such a long time of massive pain, suffering and feeling completely hopeless.

I just want to start by saying that this forum have helped me SO much!...

My story is very similar to most of the stories in this forum. I met the man of my life, after being in a terrible marriage of 6 years, were "sarcastically" I never ever experienced any symptoms. A couple of months after meeting my actual fiancé Very Happy (He proposed to me a month ago), the nightmare began, I realised that only after a day of having intercourse, I would start feeling this sort of urethral burning, and the need of urinate every five seconds, with a lot of pain for two days and then an incredible massive raw feeling in my vagina opening with stabbing pains. Literally I feel that my whole vulvar area is a massive bruise that's been constantly kicked (sorry! This is the only way I can describe it). After going to a lot of doctors and specialists, asking for swabs, urine tests, paps...more than ten thousand times (that of course came back negative), getting the usual “you have a bacterial vaginosis” “You have a yeast infection, sometimes they don't show up in tests, take this pill, use this cream”, I went back home one day feeling so desperate, alone, disappointed and scared; I started a huge online research with all my symptoms and etc. This is how I got to this forum and I am so thankful about it, because I discover that there was a condition called “Vulvodynia” and it was extremely similar to all what was happening to me. Of course I started trying every single thing I read that would help to alleviate some of my symptoms; 100% cotton underwear, low oxalates diet, coconut oil, calcium citrate tablets, vitamin E oil, and the list goes on and on and on. (nothing really changed). I have to add that by this stage I was a mess so depress and scared, my fiancé always extremely supportive, our sexual intercourse was reduce to times 0.

I finally got in contact with a Vulvar pain specialist in my area which diagnosed me with Provoked Vestibulodynia (Vulvar Vestibulitis), gave me lidocaine 4%, Amitriptiline, and referred me to a Physiotherapist. This also happened two days before leaving for a two months holidays, so it was a bit tricky to start a complete treatment as soon as possible, with my desperation I got in contact with a Vulvar specialist and physiotherapist in the country I was going to be away on holidays and went to see them the very first week I arrived. I trusted this physio when she said that “6 physio sessions” were going to be enough. I can say that physio traumatised me even more, I can't even explain how I felt each time I got out of that physio room, it was so painful and I also feel that what she was doing was very "advance", in session #3 she fully introduced me a thick dilator, even though I said to her: I don't think I am ready for this", she answered back "It is only in your head" and pushed it all the way in Crying or Very sad (maybe this is only me, but it has really make me feel even more depress).

Ok, sorry for such a long story, the thing is that today I can say that the lidocaine 4%, plus the amitriptiline have helped tons. I can't say the same thing about physio, I think I had a terrible experience with the first one I saw, now that I am back in Australia I found one of the best and will let you girls know what happens. Since I started the treatment I have had sex once, and my symptoms only lasted for 2 days, this should definitely mean something positive, right?

I feel the need to get in contact with more girls in Brisbane, I think it is extremely important to talk about what's happening with people that is experiencing the same thing, sometimes I feel so alone and I don't know who to talk with about this, is not easy.

I know that I will need to see a psychologist soon; I am not the same person I used to be. I am incredible anxious and always “waiting for the pain to come back”, sometimes I cry nonstop and of course it had affected my relationship, even though my fiancé keeps telling me that he will always love me no matter what and that we are together in this.

It's been very tough,

Thank so much for reading...


Last edited by keepdreaming on Mon Apr 29, 2013 4:32 am; edited 1 time in total (Reason for editing : grammar)

keepdreaming

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  keepdreaming on Wed Apr 17, 2013 3:55 am

I need some support pls, anybody interested in getting in contact with me? I feel so alone in this...

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  Kathye10 on Wed Apr 17, 2013 4:17 am

Hi Keepdreaming,

While I don't live anywhere near Brisbane, I can empathize with you. I'm so sorry to hear you are having such a hard time.
From someone who was perfectly fine 5 months ago, I can attest to what a nightmare this is. I didn't even know these kinds of things could happen to us women. I thought the worse was a yeast infection or BV (and of course std's)...never did I once think anyone could have chronic pain in the vulva/vagina area. I'm always up for chatting if you want too Very Happy
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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  Kathy100 on Wed Apr 17, 2013 11:48 am

Hi Keepdreaming

I'm nowhere near Brisbane either but I feel for you. The whole experience is a nightmare. Your first physio sounded really horrible! and as if she "advanced" way too quick. I've just started physio myself - 3 sessions so far with another one today. My physio is very gentle and explains what she is doing first before she does it. She hasn't done any internals yet as I had so many external trigger points and problems with my lower back that she wants to sort those out first. She has released a lot of trigger points & I'm starting to feel better - so fingers crossed. Until it happened to me I didn't know this condition existed or that you could get pain like that (definitely not in your head). Its definitely very isolating & it's difficult for other people to understand how painful it really is.

Let us know how you get on with your new physio.
Take care xx

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  keepdreaming on Mon Apr 29, 2013 4:32 am

Hi Kathy100

Thanks so much for your kind words...

I don't know where to start from! This last few weeks have been horrendous... I got a massive flare up, after thinking that my Vulvodynia was getting better. This is when I start thinking, What the hell I'm suppose to do?! What else besides changing my whole life because of this?!

I feel so distressed and completely hopeless. Maybe I am not doing enough?, but I don't know what else I should be doing?

I'm already in 50 mg of Amitriptyline, lidocaine 5%, going to physio once a week, following every single instruction! and here I am once again, experiencing the most terrible pains and so scared and disappointed.

I wish I could write only positive stuff but seems impossible...

thanks so much!....

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

Post  Vulvo1 on Sun Mar 23, 2014 5:52 am

Hi, I feel your pain. I have Vulvodynia & also Strep B. It put a massive strain on my relationship with my fiancé, nearly broke us up multiple times & also sent me into depression. The worst part was not being able to show my love o my fiancé, being to embarrassed to talk to anyone about the issue & basically being told I'm a freak by doctors after going through test after test, medication after medication, etc, etc & never having any results.

But I am here to tell you there is hope!! I am from around the Brisbane area & have been seeing Alyssa Tait from Equilibria at Salsibury, She is a miacle worker! I am still seeing her for issues related to my Strep B & PH levels but she has pretty much cured my Vuvodynia! Through her I have gone from not even being able to have my fiancé touch down there to being able to make love to him on a weekly basis in less than a year! I have also been seeing a psychologist specialised in this area at Spring Hill, her name is Alice Hucker.

Hope all works out for you!

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Re: I'm new here from Brisbane, recent diagnosis- Vestibulodynia

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