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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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


Emotional mess...

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Emotional mess...

Post  KLynn on Thu Jun 14, 2012 10:26 pm

I've been an emotional mess since finding out I have vaginismus and vulvodynia. I've struggled my entire life with weight, which was hard to begin with, but then found out at 17 that I had ovarian cysts, then I developed hair in places most women don't grow hair, I suffer from bartholin cysts as well, and about a month ago was diagnose with vulvodynia and vaginismus. I know these things are manageable but having one after the other has made me an emotional wreck. I have a FANTASTIC boyfriend who is so supportive, but all of these things make me feel like a failure as a woman. Any advice on how to handle these things would be GREATLY appreciated.

For the vulvodynia I manage it by washing with cool water and no soap as well as wearing cotton underwear, but any other tips would be helpful. Its mostly manageable, but sometimes it can be quite painful.

Thank you for any advice you can give me.

KLynn

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Re: Emotional mess...

Post  ButterflyLiz on Mon Jun 18, 2012 10:07 pm

Hi KLynn,

Not really sure what to say but just wanted to reply to you and say you’re not alone. It’s so hard to deal with all this when you’re young, especially as there’s so little info and support out there. It opened my eyes to see how many people actually suffer with this.. on here, in person at a VPS event and in recent research (around 25% of women will suffer at some point). I wish people talked about it more then we might not have all these emotional issues to deal with on top of the actual pain itself.

You’re totally not a failure, anyone who can put up with this stuff has to be a pretty strong person. Don’t forget there’s always therapy, if you think that might be of help. Over the years I’ve basically had to give up being embarrassed / feeling guilty about the condition cos I need all of my energy to focus on getting better.

Have the docs suggested any further treatment for the vulvodynia? The usual route is amitryptiline or gabapentin / pregabalin. You can also get numbing gels / creams which help some people (lidocaine – if you’re in the UK you can buy vagisil over the counter). Also, it’s not glamorous but ice packs – I use frozen peas in a freezer bag down there (you’re meant to wrap it in a towel or something first). Go carefully to start with until you’re sure helps rather than hinders! We’re all different.

Liz x
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Re: Emotional mess...

Post  bluekangeroo on Tue Jun 19, 2012 10:11 am

Hey KLynn,

Don't worry - we all totally understand what you are going through on here. You are not alone and you are not a failure as a woman.

I often feel awful about my poor patient hubby - he has v high libido and mine has totally packed its bags and gone since this thing started. We've not made love in ages. But there are other things you can do to be close.

I feel like a crap mother quite often too, I have a 6 and 3 year old and often just can't do all the things for them that I want to, kick a ball around with them, play games outside, ride bikes... I feel so utterly pathetic when they ask me to do something for them and I just don't want to move.

It's a horrible horrible condition and so misunderstood. but I am really hopeful there is an answer out there somewhere... we just need to be tenacious and find it!

Find yourself a really good specialist who knows about vulva pain and get a treatment plan put together so that you feel empowered that you are doing something about it and you are not going to take this lying down (ok you might actually want to do a lot of lying down as that might ease the pain, but you know...metaphorically speaking!)

Take care

A

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Re: Emotional mess...

Post  riv on Fri Jun 22, 2012 10:40 pm

Hey Klynn

You really have had a run of it haven't you. No wonder you are feeling crap. I know how you feel and Im sure a lot of the other women here do. I got diagnosed with endometriosis and a chocolate cyst at the same time as I was told I had vulvodynia and eczema in my vulva (just to add insult to injury). I realise now it has been going on for years (around 20) and now I am tackling one thing at a time and each time I take control of one aspect I feel more in charge to take control of the next one.

I have had the support of a very good gynaecologist for my womb which has taken me a year to get under control. I think this was probably the starting point for feeling like I could then tackle everything else - but slowly.

Now I am working on tackling my beard with fortnightly trips to the beautician for electrolysis. Next I will be using IPL to get rid of my moustache both of which I have had for 8 years and have had the power to reduce me to tears in shops with harsh over head lighting and big shiny mirrors that suddenly alert me to the goatee I thought I had tweezered away. The rest of my body hair (which is unruly, wiry and mannish to say the least from the endo and cyst) is being dealt with a bit at a time as I can afford to treat it. I quite like dragging it out this way as its also drags out the sense of satisfaction I get each time I beat another patch of hair! I do have a friend with PCOS who saved up and had virtually her whole body lasered as she was so sick of her cyst induced hair - it was pricey but she is very pleased she did it as it seems to have worked really well for her. we are both in our late 30's so it was something we had both dealt with for a long time and decided that we had finally had enough! I would say its even worth saving up for over a couple of years - I prefer spending money on my hair removal than going on a holiday this year and next if necessary


Now I am getting this sorted I am now looking at my V and trying one treatment at a time - firstly with physio - which you might want to investigate especially for your vaginismus - not sure how it would if your B Cysts are causing you problems when you go for a session - you might want to wait until those are in a good situation before trying physio

I also had Cognitive Behavoural Therapy for depression about 7 years ago which I would highly recommend - its nice to talk to someone neutral and the therapist will tell you that you have every right to feel shoddy as you have had a load of horrible things happen. They then help you to find coping mechanisms for when things go wrong so its not so overwhelming (because getting bad news - especially a run of it - is VERY overwhelming and tiring). If you are not in the UK and have to pay for treatment look for a vulvodynia pain support group - there may well be one near you - and that can be really helpful to meet other people with the condition and have a good moan

I would say that you might want to start with reducing your pain - I found that once my pain had been reduced from the endo I felt physically more capable and in turn emotionally stronger. being in pain is so tiring - it exhausts you and should not be underrestimated in how run down you can end up feeling when hurting all the time. so as the others have said get referred - a gynae for your cysts and seeing what can be done to manage those and make sure your hormones are dealt with, and a dermatologist or gynae who runs a speciaist vulva clinic. And dont be afraid to change speciaist - if you dont like your doctor ask to be referred somewhere else (there are some fantastic doctors out there but there are also a few naff ones). Dont just rely on a GP to help - they can be great as a first point of call but you need someone who really knows their stuff. Read some of the literature out there too - I am reading The Vulvodynia Survival Guide which so far is proving very informative

No one fails at being a woman. Being a woman is troublesome as we seem to have bodies that can go wrong in so many ways. We have wombs that are temperamental and our hormones make us carry excess weight and cry at innapropriate times. I do not know a single woman who does not have a female orientated medical condition (endo, PCOS, fertility issues, vulvodynia) you just find that these things aren't discussed openly. That's why these forums are so great

I really wish you luck on starting to find some answers and treatments that work

Riv x

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Re: Emotional mess...

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