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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


My belated story

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My belated story

Post  ButterflyLiz on Mon Dec 26, 2011 10:36 pm

Hi all,

I’m belatedly adding my backstory here, in case anyone is interested in my pain onset / symptoms & things that have subsequently helped me.

By the way, I’ve copied & pasted the below from a document I keep up to date & take with me every time I see a new medical professional. Saves loads of time for them to just read through it rather than asking me a million questions and me trying and failing to remember everything that’s happened over the last ten years. Plus they can keep it in my file to refer to. I would definitely recommend doing this, it really helps & always goes down very well!

Symptoms:

I have both background and on-touch vulval pain.
Types of pain experienced; stinging, burning, stabbing, rawness
Pain is worse when sitting for long periods of time & improves when lying down.


Current medication:

150mg pregabalin / day
Cilest contraceptive pill

Treatment history:

My vulval pain started in December 2001 (when I was 16 years old), 9 months after I first had sexual intercourse. To start with there was just pain on penetration, however over time it came to be that pain was present at some level most of the time.

In June 2002 I was diagnosed with vulvodynia (then known as vulval vestibulitis) by Dr Munday at Watford General Hospital.

The first drug I tried was amitriptyline, the dosage of which was gradually increased up to 150mg per day. However, I did not feel any benefit from this and so stopped taking it in March 2004.

I was then briefly put on gabapentin but felt very sick on it so did not continue.

By this time I had moved to Northampton and was sent to the pain clinic at Northampton General Hospital. This was around February 2005. They offered me a TENS machine but this had no effect on my pain. They also tried injecting anaesthetic into my genito-femoral nerve but this also had no effect on the pain.

In October 2005 I was referred to Wendy Reid at the Royal Free. She suggested I try taking antihistamines and using lidocaine gel every night and seeing how I got on. These measures did seem to help. In 2006 I had several physiotherapy sessions working on my pelvic floor, which included biofeedback as I had developed some vaginismus.

In December 2007 I had a significant pain flare up and went to see Wendy again. At that point I started on pregabalin, which is the only medication that I would say has ever had a significant impact on the pain. I started on 150 mg / day and this was slowly increased to 300 mg / day. Gradually, my day to day pain began to lessen and I was able to have almost pain-free sexual intercourse for the first time in many years. However, I was aware that even then the condition never completely went away.

In July 2010 I agreed with Wendy Reid to taper down and then stop the pregabalin, as it had probably helped all it was going to. However once I had done this I had two very bad pain flare ups – one in October 2010 and then another in January 2011. This second one left me extremely shaken as the pain was intense – so bad that I ended up taking two days off work. I subsequently developed anxiety and panic attacks, for which I went on a three month course of citalopram.

I went to see Wendy who put me back on the pregabalin at 150 mg / day and I have been on the same dosage since then. So far I have not had another flare-up. I am also having CBT sessions to help me cope better with the negative thoughts I have surrounding my condition and more physiotherapy to re-learn how to relax my pelvic floor muscles.


Self-help techniques used:

• Pressure relief cushion at work and in the car
• Aqueous cream – this is very soothing & is all I use to wash my vulva
• Vagisil (topical anaesthetic containing lidocaine) – although sometimes I cannot tolerate anything on my vulva
• Ice packs
• Try to avoid restrictive clothing and underwear


Other conditions:

• Extremely painful periods when not on the contraceptive pill
• Mild IBS
• Mild asthma
• Occasional thrush
• Poor circulation to hands and feet (get very cold)


Btw, the latest is that I’m due to have a pelvic MRI scan on Thursday. Not sure that anything will be found but it’s worth doing to rule things out, especially as I still have an instinct that something is structurally wrong somewhere in there.

I’m also going to have a bilateral pudendal nerve block at some point, but there’s a waiting list for that. Which I’m not complaining about, because I’m TERRIFIED of having it done!!
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ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

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