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Tue Aug 15, 2017 6:36 pm by Kezz

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

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Sun Aug 13, 2017 4:27 am by Hopeitworks

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» 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 !!!
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» Pain management - what works for me
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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 …

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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). …

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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.

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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 …

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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 …

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Just needed to let it out

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Just needed to let it out

Post  tweety on Sat Jun 19, 2010 12:31 am

It's all just been building up for a while... I don't have a place to vent or share because I spend each day putting on an act pretending that I'm ok. Although my closest GF know about my condition, I can't talk to them about how I feel... because right now, the topic of conversation within my group of gal friends is wedding plans, engagements, shopping for rings, baby showers.... I'm just over it and need a break from all of that. They're all getting married/engaged this yr. I just need a break from hearing about it or seeing it....

I actually took a day off work this week because I wanted time to myself. Then that nite I had to go to a friend's house to discuss how we would decorate her house for the engagement party.... AaaarrrGGHH! i've "volunteered" to make the engagement cake too... Bloody hell!!! I'm over it.

I'm still living at home and no-one in my family knows about this. Sex is a taboo subject so I never really have a chance to just let it out and cry. That's all I feel like doing right now.

Last nite just pushed me over the edge. I went out wif some friends (which included my most recent ex)My ex and I are on good terms... We were having coffee and a girl had called him up... that just felt like a stab through the heart. Then we went to a bar for drinks and stuff and I could tell it was awkward... He's having a perve on the girls but not wanting it to be obvious because I'm there. In the end, I just left.

I seriously just can't hangout with any of my close friends. And I can't tell them that sometimes I'd rather just not catch up because I don't wanna hear about your wedding dress, I don't wanna hear about how much your BF loves you and your getting engaged, and I don't wanna hear about how you want babies when I can't even have sex!

Right now, all I want is a hug... a shoulder to cry on and I don't have anyone who can do that for me.... *sobz*

Anywayz, just sharing

Sue

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Re: Just needed to let it out

Post  Sarah001 on Sat Jun 19, 2010 11:24 am

Tweety I know just how you feel, I've been having bouts of avoiding my friends for a while for years. At first it was because of my joint problems and I couldn't do all the stuff they can, some of them no longer contact me for that reason, and now it's because as you say they are all planning weddings and having flings with people and obviously I can't even have sex with my partner! My partner is getting annoyed about the situation like I'm doing it on purpose so it's causing problems between us too. There's no-one I can really talk to about this, only one of my female friends knows about it and she's so busy with her exciting new business and relationship she clearly doesn't understand how it feels to be me.

The best I can do is send you a virtual hug and tell you you're not on your own and if all us women keep communicating sooner or later we will all find ways to cure or manage our problems.
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Re: Just needed to let it out

Post  tweety on Sat Jun 19, 2010 12:15 pm

Thanks Sarah... a virtual hug from someone who, at least I'd know would understand, does make it better. I don't always feel like this. I am truly happy for my friends and all but it's just getting to be a lil too much. I've got to stick it out til April next year for all the weddings.

I've been thinking about how lovely it would be to live elsewhere for a while (i.e. overseas) just to get away from it. But I know I have a good thing going right now in terms of treatment. I have a doctor who has heard of Vulvodynia and specialises in the "vulva" area and a physiotherapist who has worked with people with pelvic problems. So I'm just going to have to stay put for my treatment.

Cheers,

Sue

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Re: Just needed to let it out

Post  naomi on Sat Jun 19, 2010 8:48 pm

hi hunny,

Heres a massssssssssssssssssssive virtual hug from me....as long as I can get one back Smile
I too am fed up and so mentally tired of putting on the "happy" act in front of people. I've had it up to here with acting....now I'm at my folks house in pj's after crying my heart out.....stuck in a nightmare that just wont let me out.

The only things I can do to briefly take my mind off my raw la-la is cross-stitch...yes I knw it sounds sad....Im 28yrs old, boyfriends at his flat. and im at my parents doing this long and feeling like crap!...Really ought to be dressed up in a wine bar with friends, But I just cant hack it Sad

Oh pooooo im probably making you feel worse, sorry.

But yeh, you are not the only one. Im right here in sunny England xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

BIG HUGS ALL ROUND XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
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Re: Just needed to let it out

Post  tweety on Sun Jun 20, 2010 2:35 am

awwww thanks Naomi.... *BIG bear HIGZ* right back at yah! hehehe

yeh, I've been baking cakes and make jewellery.. but what I really want is to be able to call a friend to go out with and be able to vent and cry.

I can't believe you're in SUNNY England.... its grey, cloudy and drizzling in Melbourne. Then again it might change to sunny in the next hour...HAHAHA

I don't know how I'm going to get myself out of this mental rut. I have my appointment with a counsellor coming up so that always feels cathartic... I get to just cry it all out.

Do you reckon it would be ok if I passed on helping my friend decorate her house for her engagement this week? My other GFs will be there to decorate... I just don't know if I can really motivate myself to put on a whole happy act for the night without shedding a tear. I am quite emotional this week... it's just been building up for too long

*HUGZ* xoxoxox

Sue

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Re: Just needed to let it out

Post  jules on Sun Jun 20, 2010 4:32 pm

Hugs to all women suffering across the world. It is amazing how many women across the world suffer from Vulvodynia. We are not alone. sue, I think it is just fine to opt out of helping at your friends home. you can just say you don't feel well...and that's true. this disorder and the feelings involved are hard to run away from. Its interesting many of you haven't told people. i have told all of my friends, my family and many coworkers. I think it is a great way to educate others about this disorder and of course, we did not do anything wrong to get this disorder. As I mentioned earlier, I have been where you are emotionally. I actually increased my anti-depressants. That helped alot. I stopped crying everyday. The thing that helped most was a decrease in my pain. The mix of medications I am on is helping. But, I still have my days. I feel bad for those of you who are having a difficult time finding a man or trying to keep him as a result of not being able to have sex. There are other things besides sex. I mentioned I have been married for over 20 years. I have a very understanding, patient husband. I am fortunate. He has heard me complain about my pain over and over again. He asks me constantly how i feel etc. Sometimes...i think he is so sick of hearing about it he half listens.

I want you all to know, You are not alone. you have a right to feel bad for yourself and you will find relief at some point. keep on writing...it is very therapeutic!

julie

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Re: Just needed to let it out

Post  Sarah001 on Sun Jun 20, 2010 6:16 pm

You're absolutely right Julie there are so many women with the same problem but I'm always surprised how few of them actively participate in forums such as these, the more of us who post the better the chance of some of us finding a connection or a solution. My partner and I have been together for almost 13 years but I just think he's so sick of all my painful problems he's thinking it's not what he signed up for! He's already had to do the 6 years of my joint problems which badly restrict me and cause me huge amounts of pain then all of a sudden I have vulvar issues too. I don't really blame him for being a bit fed up if I'm honest!
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Re: Just needed to let it out

Post  tweety on Mon Jun 21, 2010 11:08 am

hey guys....

its good to know someone is listening. they do say about 5% of the female population will have this condition... that's 1 in 20.. the stats somewhat make me feel better. I guess the reason I haven't told people is because with my culture and my parent's generation sex is not something we talk about openly. It's assumed you're a virgin until you're married so you can see why I'll never tell them of my condition.

As for telling friends, I think I've just had to deal with this for what feels like such a long time that even just thinking about it makes me burst into tears. My close GFs know but I just get so upset even thinking about how it makes me feel.. I don't think they want to upset me by asking me about it.

Anyways, I've decided not to help out with the decorating. I really am feeling emotionally unstable this week. I'm just scraping through at work.

I'm not sure how I feel about increasing my anti-depressant medication. I'm on low medication right now and its purely for the vulvodynia. I don't want to think I'm at the stage where I need to be medicated for depression but I have a feeling that I probably need something as I'm just feeling extremely emotionally fragile right now. I have my appointment with the my counsellor on Wednesday... Thank god!

And I've decided I desperately need a holiday. I just feel like I need to take myself away from my current environment... somewhere I don't feel like I need to be happy for someone else, or feel resentment of my friend's lives.

Anyways, take care and chat soon

Sue xxx

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Re: Just needed to let it out

Post  Sarah001 on Mon Jun 21, 2010 11:15 am

I think you're right to say no to certain things, I do when I can't manage them. Us women have such a hard time saying no to people and really we should put our health first and not feel bad about it! I heard the figure was actually 15 - 16% of the female population so that's even more women with the same problems we have!

Stress doesn't help with the situation either, I try and spend a little bit of time each day just relaxing and breathing. Stress messes up the hormones in the body and makes us unable to fight off inflammation so trying to keep stress levels down is a good thing to do. I know it's easier said than done but you could ask your counsellor to teach you some relaxation methods.
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Re: Just needed to let it out

Post  tweety on Mon Jun 21, 2010 11:39 am

Yeh, I really need to learn to relax. I've been having trouble sleeping early and getting enough rest. I must remember to ask my counsellor because I know she was going to show me techniques too.
=)

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Re: Just needed to let it out

Post  jules on Mon Jun 21, 2010 6:09 pm

Hey tweety,

You definitely do not want to increase your meds unless it is necessary. For me, it made all the difference in the world. I was feeling hopeless, almost wanting to give up w/ the thought I would have to live w/ horrific burning pain all the time. The anti-depressants pulled me out of that. Of course, my other meds that helped w/ pain helped as well.

We are care-takers. The first person we need to take care of is ourselves. I love to hear that you plan to learn techniques to relax. My technique is t.v. and the internet (ha ha) I just finished three years of school so i LOVE my free time. It is awesome to connect w/ other women who know how I feel. Thanks for being there...talk to ya soon!

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Re: Just needed to let it out

Post  tweety on Tue Jun 22, 2010 10:40 am

hey jwjules,

Yeh, I'm actually a very high strung tense person and my mind does not switch off. If I'm not stressed and thinking about work I'm thinking about cake designs. Ever since I did a cake course 1 month ago, my brain stays up til 1-2am thinking about my next cake design.

I can actually feel my muscles stiffening up because I haven't been doing my physio exercises as much as I could. And I'm more aware of my achiness and pains.

I think I'm actually feeling a lil better than I was last night and over the weekend. It must help being able to share this with others... feels less lonely too.

anywayz, xoxo

Sue

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Re: Just needed to let it out

Post  naomi on Tue Jun 22, 2010 5:36 pm

Cake design's a good idea! I try to do cross stitch everyday just to take my mind off things but most of the time Im just a complete stress ball!!

I tend to get very introvert in a way and close off from friends, not answering the phone etc etc. I know I have been like it for a few weeks again now but its been exactly a year since I was signed off work...makes me feel so pointless. I try to be positive and do volunteer work but that usually doesn't last very long, then i feel guilty about letting people down, even though they know the score.

Ive been seeing a (spelling is horrendous!!) phiciatrist/counsellor,since last aug/sept every week. I went to her because my GP sent me telling me i was causing my condition due to my anxiety...which stressed me out even more as it is NOT in my head (I could have swung for git). Within 30 mins of my initial assessment she told me it wasnt in my head.

I just can get out of the 'feeling sorry for myself'. Other people seem to be able to with this condition but I cant get myself into a good place and just dont cope.

How do you keep yourselves' strong??? being so sore and raw all the time makes me so upset, no sex (which i know isnt the bee all and end all) but Id do anything just to feel normal and happy again. Man what Id do to just feel happy and drop all this anxiety and stress.

Its easy to say 'dont get so stressed as that wont help matters' but my brain just doesnt listen!!! stooopid brain.

Today I did the usual, wake up with a start, head races, stomach just churns, then i try to squeeze my eyes closed but cant get back to sleep. urghhhhh, its like stage fright!

I stayed in all day and did some sunbathing/cross stitch, Im not usually a sun worshipper but Im going to Turkey on Friday with my best mate. I booked it a few months ago when i wasnt feeling so bad or as sore/raw. So im really struggling to calm myself down to go. Ideally I wouldnt go but I can cancel it with my mate Sarah.
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Re: Just needed to let it out

Post  Sarah001 on Tue Jun 22, 2010 6:43 pm

Personally I stay as relaxed as possible with self hypnosis, I'm actually a qualified Hypnotherapist so it's easy enough for me to do that. I don't think stress causes the problem but it does make it harder for the body to heal because it disrupts the immune system.

I don't think I am managing to stay strong, at the moment I'm still trying to rule everything out so it's occupying my mind so I don't obsess about it. If I get to the stage where there are no more options I don't know how I'll react, when I got told there was nothing except a life of ever increasing painkillers for my joints I sank into a deep depression and had only just managed to drag myself out of that and accept my fate when this vulvar problem started. Believe me I feel sorry for myself too and don't know why I have to have all these painful conditions, why can't life just cut me a bit of slack for once?!
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Re: Just needed to let it out

Post  tweety on Fri Jun 25, 2010 1:20 pm

Hey gals,

I know how you feel... It's hard to feel anything else about this condition but sad that you have it. And it is hard to stay strong and keep on trying when nothing seems to really work.

So for now, I say find some pleasure in something else in life. That's what I'm trying to do.

Naomi - Sounds like you're becoming an expert at cross-stitch. What do you do with all the things you've created? It sounds like you're being too hard on yourself. Really. It sucks having this and there's nothing wrong about feeling that way. And trying to cope with this is stressful - I keep my sanity by seeing the counsellor. If I didn't, I think I would have just cracked it long long ago.

Sarah - I think it's great you're continuing to find new options. So keep us posted.

I'm still getting through my emotional breakdown. The highlight of my week has been the delivery of my cake boards. How sad is that? It did cheer me up a little. It was like opening up a pressie. Besides that, everytime I went for a toilet break, I would start to tear up in the cubicle.

As for relaxation - my counsellor will send me through the techniques when she finds it. I really need to learn how to relax. I've lost so much sleep lately. And my breakdown hasn't helped my progress or lack of progress at physio...

It seriously is just too overwhelming sometimes.... *Hugz* to you all gals!

Sue

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Re: Just needed to let it out

Post  naomi on Fri Jun 25, 2010 3:11 pm

man we all are friggin brilliant though for getting through this! Smile And I know we are all online and 'invisible' but it does mean so much to have people who can relate. Thanks so much for being out there but im not thanking your condition one bit!!!

Evil or Very Mad

Im currently waiting to go to the airport - Turkey, Im so worried about being away from my comfort zone (mum and dads house, sofa, hugs etc). I fret that I might get so down and my best mate has to cope with me on hol and i'll spoil it for her Sad My moods just go up and down and so unpredictable!! Not moody or PMT at all but low, 'despair' I know that sounds like a strong word but thats whats its come to after so long. So planning trips, evenings and social things have to be played by ear.

Im babbling again!

~Sarah! Im only doing a winnie the pooh cross stitch but its about 30cm x 30cm....taking me soooooo long to do!!! I'd like to find some funky modern ones that would sell if I framed them but Ive had a look around and found none! So if anyone can recommend?!


If anyone is in England and wants to do a day retreat etc I can recommend this place.....

http://www.globalretreatcentre.org/retreats/odr.html?event_id=483

I went last year with my friends and is very very good. Run on donations too so there is no set fee to pay (good for me as Im now on shitty benefits) I'll be booking another day retreat when I get home from holiday, so if anyone fancies it?

Right, deep breathes. Im off, speak to you soon.

HUGE HUGS FOR YOU ALL XXXXXXXXXXXXXXXXXXXXX

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Re: Just needed to let it out

Post  tweety on Sat Jun 26, 2010 5:58 am

Hey Naomi,

I think you should make the most of your getaway to Turkey. Just enjoy it and let it be. Your friend is there to support you, so trust me, you're not ruining their holiday.

As for you're cross-stitch... its sounds gorgeously cute! You'd be what designs actually sell. I think if you put it into a modern simple frame.. like a white frame that's deep... it would look fab!

Anywayz, take care

Sue

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Re: Just needed to let it out

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