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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
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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 …

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). …

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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.

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 …

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Bloke looking for advice.

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Bloke looking for advice.

Post  Ben on Mon Dec 13, 2010 12:28 pm

Hi All

My first forum thingy so not sure of the etiquette. let my know if i'm posting in the wrong place or suchlike.

I'm just a little lost and looking for some help here, lots of info out there but nothing for partners and what i have read seems rather negative.

So anyways, i'm 30 and my lovely lady is 27 and although only recently been diagnosed she has been going through this for a couple of years. Unfortunately being passed around from pillar to post by Doctors until a specialist in New York finally got it right.

Just knowing makes such a difference and we can now focus on working through this. we met almost a year ago and sadly i've been dragged away to Australia for a few months so have been doing the long distance thing. The fire is definitely burning bright, and i'm as supportive as i can possible be from 9000 miles. i just know that we will both get through this. We're back together in a week and boy i can't wait.....

The things i wanna know i guess is - i'm really worried about hurting her and it worries me so much. I really want our love making to be a gentle, sexy, positive thing that we both look forward to. i know there will be failures and triumphs along the way but it seems that a lot of things i've read suggests the blokes libido dies. (I guess it can really knock a guys mojo for things to keep ending in pain. Blokes don't want to inflict pain or discomfort on the one they love the most). So, have any of you got any tricks up your sleeves or suggestions. i was thinking maybe oral sex with ice-cream could be a goer? good / bad? are there any lubes that work the best? do some positions hurt less if we try ? We've tried making love before but it was too painful. but she has been going to regular Physical therapy and there's a glimmer of hope there, and we're going to try. All i really want is, not to make unnecessary mistakes like some other chaps, and for us to both still have fun as we work our way through this.

So any advice is really appreciated.

Ben

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Re: Bloke looking for advice.

Post  Sarah001 on Tue Dec 14, 2010 1:55 pm

Hi Ben, welcome to the forum. I think the reason nobody's answered the post is because it's really difficult to give you very precise advice. As we're all different, some women on here can tolerate sex but most can't, it's impossible to tell you what position to use etc. Basically you and your girlfriend need to work through positions to see what works, if anything. There is a product called lidocaine which numbs the area and it can be applied a few minutes before sex but again not all women can stand the actual lidocaine on the area and of course if the man gets it on him he won't be able to feel anything either.

Lubes are essential but again it's very individual as to which ones suit. I think the female probably loses her sex drive more often than the male as pain is never going to be a turn on. The two of you need to work together to figure out what she can stand and what she can't but a word of caution to your lady friend, if she feels pain with something it's not worth doing it or it will make the pelvic floor spasm which results in even more pain so penetrative sex might be out for now.

Ice cream may or may not be ok, probably a plain ice cube in your mouth would be better as ice cream contains sugar which can cause a yeast infection and cream which is alkaline so may alter the ph of the area and cause more problems. Really it's a case of trial and error between the two of you but avoid anything painful even it means a temporary halt to sex in any form while your girlfriend works through physical therapy.

That's the best advice I can offer I'm afraid, not very precise but I hope the two of you can work through this.
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Re: Bloke looking for advice.

Post  naomi on Wed Dec 15, 2010 1:37 am

I wish my ex was as thoughtful as you!...hence the reason he's an ex Smile

I can't really speak for your other half but I'll tell you how I felt with regards to sex etc living with this condition...

I loved the hugs but felt I constantly on my guard and uneasy if started kissing as I knew it would lead onto other things. I would tell him this beforehand then he'd push his luck, then id complain and then have a massive guilt trip over it. So maybe make things clear if you are having a cuddle etc just to make her feel at ease?

I myself can not tolerate vaginal sex as im constantly raw/sore but anal was fine and enjoyable...lots of lube needed thats all. And basically go easy...it can be painful at the best of times without the porno type sex!! Ive got v sensitive skin and a few allergies and used to use coconut oil instead of lube. You can buy tubs of it in the health food store...its solid and then the heat melts it. It also kills those bastard yeasts as well! And a very good moisturiser for dry skin so great for massage. Good all rounder in my book Smile

I'll be honest, 90% of the time sex was and still is the last thing on my mind. And it was a relief for me personally to break up with my ex as he did lay the guilt thing on me quite heavily. Or pester. It wasnt that I didnt want to but it was so so sore 24/7. So yeh, always ask what she is happy with and never pester. (pesters a horrid word to say i know but i cant think of another word at the mo!)

As long as you have the closeness and complete understanding you will be fine. Talk about the mental aspect of things as well. I made the mistake of not doing that and it lead to my break up...theres only so long you can hide how you are feeling until it turns to complete melt down...my ex couldnt handle how low and down (basically shit scared out of my wits with worry) I got and I got fed up with painting a happy face on all the time. Shes going to be stressed to the eye balls with it if she is anything like me.

Youre doing a brilliant job of researching and involving yourself in this already! You sound like you are in it together and thats fab to see.

I cant think of any more advice at the mo but will add on if I think of more.

Just keep reading the forum really and keep up to date with folk. Is you partner on here? Would be good if she is. My main thing is the feeling of loneliness and this site has helped me feel like im on my todd.

Keep in touch.

Naomi x




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Re: Bloke looking for advice.

Post  jules on Wed Dec 15, 2010 3:30 am

Hi Ben,

Welcome to the forum. It is very admirable that you are looking to find out what works out best for your sweetie. The ladies are correct when they talk about different things work for different women. It also may depend on what kind of Vulvodynia your partner has. There is generalized Vulvodynia (pain on the outside of the Vulva) and Vestibules Vulvodynia (pain in the vagina and opening). I have Generalized Vulvodynia. Sex for many of us equals pain. So, with that in mind, sex is not always welcome. There is a lot of anxiety created when it comes time to have sex or even when our partners look interested. It's great that you are thinking ahead. Pay close attention to her cues and her mood.

The best thing you can do is to communicate w/ your partner. Ask her what she feels comfortable with..what hurts? doesn't hurt? etc. Some women can't even be touched. Other women, like myself can handle touch and sex(sometime), but it may hurt afterward or during. I usually have a couple of cocktails ahead of time. Not only does the alcohol relax me, but I have less pain during sex. Partners can even work with physical therapists to try to get to a place where sex is not as painful for the woman. I don't know if your "lovely lady" is on medication or not. medication can decrease some of the pain. I recommend medication and physical therapy.

as for lube. I use K-Y Jelly- INTRIGUE This is a water-based Gel that was recommended to me by my ob/gyn. I can't do the anal sex and oral sex is not for me w/ my outside pain. But once again...talk to your lady. Be understanding, gentle and kind. Hugs and kisses are always welcome. Good luck.


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Re: Bloke looking for advice.

Post  Ellie on Wed Dec 15, 2010 6:14 am

It sounds like you and your lady Ben are on the right track! (spite having the Vulvodynia). My boyfriend and I have been together 2 years and I just (like 2 weeks ago) found out that I do have Vulvodynia. I hope to see a physical therapist soon and hope that helps with the pain because I do miss having sex that we both can enjoy. How has your girlfriend been doing when seeing one? Has she been seeing good results? This site has been really helpful and I hope it is for you Ben.

And Naomi I didn't know about the coconut oil! That sounds like a good idea because I have been avoiding lubes because most of them have been irritating me so much. I have found condoms to bother me also. For me anything that goes near my opening hurts and makes me want to cry. We do a lot of clitoral stimulation, which personally to me feels good, but like others have said every woman is different!
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Re: Bloke looking for advice.

Post  Mouse on Wed Dec 15, 2010 7:47 am

Hi Ben,

I'm not sure if anyone has mentioned this BUT please find a good sex therapist. Talking openly in a safe environment is a great place to start. When this crazy shite started for me, my gynys only advice was to do that. I could have punched her (I may still do that). I was mortified because she had no idea what this condition was - imagine that and treated me like a crazy person.

I did find a therapist. After sending her an angry email she came back with fab advice and I now see her regularly. It just makes sense that a sexual issue needs someone with that kind of experience. I tell people she's my pain therapist though, this is partially true as she's taught me ways to handle the pain.

By a stroke of extreme good fortune I also found a vulval pain specialist.

Good luck! There are some great support sites also.

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Thanx

Post  Ben on Wed Dec 15, 2010 8:21 am

Hi Peeps,

Thank you so much for taking the time out to post a reply, i really do appreciate the advice.

It's a bloody minefield at the best of times and then when you throw this into the mix, well it just ain't gravy for us poor man folk either.

Good call on the ice cubes instead, and coconut goo, i think i'll try that if she's up for it.

As for being open and honest with each other,I think we're pretty good at that. I said that, so long as i understand and i feel i'm kept in the loop completely then we can pretty much deal with it as a team rather than individuals. I think that's better than standing at the sidelines scratching my balls and getting frustrated. hence the reason I'm on here really. but in the same respect, i don't want to keep pumping her (excuse pun) for information to the point that sex becomes too technical for us.

Ellie - From what she's told me physical Therapy has been going well but i get the feeling that things happen with small steps in this world, so we shall see. but is it wrong that i'm strangely jealous of her OBGYN since she's getting more action than me!!!! (i'm kidding guys)

Thanks again, between you all it sounds like the makings of a wild night - recommendations so far, - Get her drunk, give her a back rub with coconut oil,then a bit of tongue lashing with an ice cube, slap on a load of KY intrigue and go in for my brown wings, oh and have a bit of a cuddle afterward...... legends the lot of you!

Laughing

Chin up and if i can answer any Q's you guys have or if you want a guys version gimme a shout.
x

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Re: Bloke looking for advice.

Post  jules on Thu Dec 16, 2010 3:00 am

LOL ...Ben, you summed up our suggestions very well...in a "manly way" I might add. Thanks for the offer back to us on answering questions. I'll try to think of some.

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Re: Bloke looking for advice.

Post  Sebby (Admin) on Thu Dec 16, 2010 9:53 pm


Hi and Welcome Ben,

Sorry I havent welcomed you earlier Ive have had such a stressful week at work and sooo glad is Friday tomorrow!

Its great how supportive your being and yes it must be so worrying thinking that sex will hurt your girlfriend.

http://www.chemistdirect.co.uk/sylk-natural-personal-lubricant_1_21800.html?gclid=CJazt_Td8aUCFVBO4QodryllpQ

Above is a lubricant that has been suggested to me but I havent tried it yet as im not in a relationship but it looks like its non irritant. See whatever works for her but water based lubes are much less irritaiting in general and the less chemicals the better.

I would also suggest lots of gentle foreplay whatever is comfortable for you both..also why not try some sex toys as well to ad variety

With regards to intercourse I have found that I need to firstly be on top as I can then guide his penis inside myself and it puts me in control of how fast and slow I wish to go.

Does your girlfriends pain sometime ease up on certain days? I find I have flare ups and then it calms down. Im mostly always uncomfortable but I can cope with that its when its very raw that I couldnt tolarate intercourse. On better days tho I would say are the days to practise! Dont bother on the very painful days.

It also maybe an idea your girlfriend practises herself with a small vibrator/dildo whislt your away! I have one from Ann Summers that is quite slim so is good to practise with at first. I had a look at the Ann summers site but I couldnt find the one I have so have found another site for you

http://www.condomsenseusa.com/vibrators-slimline.html

In general take things slow, practise intercourse on the better days. Let her be in control at first and lots of lube and foreplay..hope this helps

Take Care
Sebby
xxx
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maybe u can try this

Post  chester on Mon Dec 20, 2010 10:33 pm

If being in a bath helps/sooths the pain...try taking a bath together, for me and my husband it works miracles. since (sometimes) taking a bath helps...just make sure not to put any irritants into the path, i actually put into the bath a special vitamin e and other things that help me...other people dont put anything in...anyways we make it really romantic (candles, etc) and its really nice!

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Re: Bloke looking for advice.

Post  Sebby (Admin) on Tue Dec 28, 2010 11:50 pm


Awww Chester a great suggestion! Ive never actually thought of that though it gets quite awkward in the bath and the water splashes everywhere Laughing
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Re: Bloke looking for advice.

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