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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


Vulvodynia and My Life

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Vulvodynia and My Life

Post  Yangle on Mon Jul 25, 2011 12:16 pm

So for me it all started like so many others it seems, a yeast infection. I took some anti-thrush cream and it cleared up the thrush (I stoped getting the discharge) but the pain never went away.

After about 3-4 months of pain I realised that something was wrong so I went to a walk-in Gyne who did all the tests (blood, urine etc..) and found 'mild urinary infection' and reckoned it was probably still thrush. So off I went with some more thrush cream and some antibiotics for the infection. Still no improvement, so went back and was referred to a woman's specialist. Saw them, they referred me onto a consultant. They saw me once and went on maternity leave (all the time between seeing these dr's was a 6 week NHS wait...) they referred me to another hospital to carry on my 'treatment' (at this stage was nothing). That doctor saw me once and referred me onto a dermatological dr at another hospital (still a 6 week NHS waiting times...).

So saw the dermatologist about a year after seeing the first Gyne. They gave me some steroid cream which didn't work. After a couple of months of trying that went back and got referred onto a pain specialist. They saw me (NHS 6 week wait) and said they couldn't help as it was Gyne. So referred me onto the Gyne (6 weeks...). Saw Gyne who gave me Amitriptiline (sp?). Tried this for 6 months to no avail. Just made me moody, and fat. They referred me onto a nerve specialist within Gyne who sent me to have a biopsy (6 weeks...) that happened....and was the most painful thing in my life once the local anaesthetic wore off! Went back, nothing special in it apart from slight eczema. Then... my personal life got completely in the way.

During this 'fun' doctor referral pass the patient game, things were weird with my partner. I was with ... let's call him X. He was supportive on the surface, never pushing to have sex (as I couldn't as it was way to painful to sit down, let alone do anything). But he kept pushing me to try psudoscience (OK point for the record, I have nothing against people who use it. It is shown that the placebo affect can work quite well. However I am a raging Sceptic and don't believe in things unless they have had conclusive double blind trials with large samples..) he would often say, "try this oil" "try this" "try that" and get annoyed when I didn't (or did to please him and it didn't work. I tried the low oxalate diet as well which didn't work. We would argue often about random things and I broke up with him as I couldn't bare the arguing. I never argue! So I was still living in the same house as him (tenancy agreements I couldn't break) when I accidently (I really wasn't looking for it) fell in love with someone (let's call him Y).

This next bit, please don't judge me. Everyone has differing opinions and do things for reasons. Please if you don't agree then don't post anything as It's something I have to live with.
One thing led to another, and we ended up having sex! (which... man was amazing! First time in about 3 years! I guess it was the excitement, adrenaline... and mind over matter as it didn't even hurt... until afterwards) Anyway it was such a last minute thing, a moment of passion that we didn't use protection. (Hell I didn't know I could even have sex!) All this time my ex (X) Was getting angrier and angrier. Life was hell living with him. I spent most my time at Y's.
I found out a month later I was pregnant. I had phoned my sister and asked her what I should do. She said she'd email me as she was at work. So I received her email detailing my options in her opinion. I was staying at Y's that night when I got a call from X saying he needed to talk to me. I went back to X's (where all my belongings were) and he said he knew I was pregnant and got angry. I asked how and he said it was in my email (so he HACKED my emails!!). Then he started shouting and calling me whore (even though this was 8 months after breaking up with him) and then he cornered me and hit me. He punched me in the face to the ground. I screamed and luckily my other housemate was in and came running up and pushed him off me. I grabbed my bag and she took me to the station. I have never been as scared before in my life.

Anyway, to cut a long story short. I took out a loan to pay for the rest of the rent on that house and to rent another at the same time. I had an abortion as me and Y had only been going out a month and whenever I thought about things I would have flashbacks of X hitting me, and my fear. I couldn't face going through with things whilst that was emotionally over me. I was a bit of a wreck to say the least.

I never went back to the doctors about my Vulvodynia as it was the last thing on my mind. Things seem to equal out a bit, my vuldoynia got a bit better, I could have sex once a month and it fell into a cycle of pain which I could deal with (more painful over my period, and either side, lesser so the other week). Little over a year later I went back to my GP (well a new one as I've moved since) and started getting the ball rolling. So here I am. Waiting 8 weeks for an NHS appointment to start the pass the patient fun again. The pain is starting to increase again which is annoying, but not as bad as it was when I was with X. Y is still with me and the best partner a girl could have!

That's my story! ... So far Wink
you know, that felt good getting it all out somewhere. I've never told anyone the whole story (apart from Y who was part of it!)
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Re: Vulvodynia and My Life

Post  noni on Mon Jul 25, 2011 3:16 pm

Hey Girl

Wow...your a really brave and courageous woman, you have been through so much!

I will try to post more later as I have to go to work.

Welcome!!

noni
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Re: Vulvodynia and My Life

Post  Sarah001 on Mon Jul 25, 2011 7:06 pm

Hi and welcome, seems like you've been on the NHS "merry go nowhere" like the rest of us UK girls! Funnily enough my partner behaved supportive on the outside at the start and was very calm about no sex for a while but I didn't click until I found out he'd been sleeping with someone else anyway and couldn't give a shit if I could have sex with him or not. We are still sharing a house as we have a joint mortgage on it and he's behaved like a complete prick since January, threatening to break my fingers or push me out of a second floor window etc and finally after 8 months of that he'll be moving out permanently on Thursday this week so I know how hard it is to live with a volatile ex. Don't feel bad about any of your actions, you're just human and we all do what we need to at the time to survive and stay sane.

Onto the V, I didn't get much help from Ami either, Pregabalin has helped a bit but not enough for me to think it's definitely nerve related. I've got Hypermobility Syndrome and Fibro so I'm head to toe trigger points and muscle spasms to compensate for lax ligaments which complicates things alot. My pelvic floor is horrendously tight so I'm pretty sure it's the source of the problem. Have you considered getting your pelvic floor checked out by a women's health physio? It's a good place to start while you wait an eternity for referrals. Rolling Eyes Anyway welcome.
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Re: Vulvodynia and My Life

Post  Sebby (Admin) on Sat Jul 30, 2011 7:37 pm


Welcome to the forum, you certainly have had a lot going on! I'm glad things are going well with Y and that you do find a caring and knowledgeable doctor (even on the nhs!)

Have you looked at the uk Vulval Clinics? There is a link to the website at the top of the Vulvodynia Info category

Also look at getting refered to a women's physio to see if your pelvic floor could be involved in all this

I am currently on pregabalin which helps but is not the whole answer. I am also doing pelvic floor biofeedback from www.vulvodynia.com (Dr Glazer) I found it was helping then had a break after sensor broke, then horrible flare up and am now able to do it again after receiving another sensor (a bit of a rollercoster)

Yes the NHS are bloody irritating with all the long waiting for appointments only to be re-refered Mad dont give up though finding a treatment that works for you

Anyway as far as I am concerned it was the best thing to leave X as he was certainly not supporting you.

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