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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


Easier sex?

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Easier sex?

Post  Layla2121 on Fri Apr 13, 2012 1:43 am

I've only recently found i've had vulva vestubulitis (after years of thinking it was all in my head) and it's been quite depressing finding that there's not many treatments out there for it. I was hoping that, since i can't cure it, there might anything i can do that makes the symptoms more bearable - and make sex easier?

I've been with my boyfriend for 2 years and its almost always hurt during sex. At first I thought it was normal (since i thought after your 1st time it took a while to get used to it) but i've realized this isn't normal and it always seems to be just the opening of the vagina that gets sore and inflamed.

I wondered if anyone has found something that helps make sex less painful? I've heard that you can numb it but since i dont really trust condoms, my boyfriend would probably get numb too - which sorta defeats the purpose xD Is there any creams or anything that helps stops the pain but doesn't effect the contraceptive pill?

Please help D: x (I made it colourful so it's more fun to read ;D)

Layla2121

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Yes you can make it better

Post  LizLemonny on Sun Apr 15, 2012 5:52 am

Your experience matches mine, though I was not diagnosed for much longer, after I became more communicative to guys I was with and several said that this WAS very unusual; so I went back to the doctors and said there WAS something and I would not be denied or fobbed off, and got referred to a proper gynaecologist and got my diagnosis. It's Vulvar Vestibulitis VVA and sounds like yours.

I had a long-term partner and sex with him was much more manageable as we could fully communicate. Most of this is probably evident to you and your BF but here you go:

1. Know exactly where your weak spots are.
2. Warm up for ages before attempting penetration - build in routines that are outercourse ie frottage (very good and guy likes it), hand, oral if you like, self stimulation for both if you like.
3. Pschology of guy - they get anxty if they don't know if sex is on the menu or not so tell them asap before or during - I think we can/can't have sex tonight. Once they know they relax much more (either way).
4. Make sure you know the guy's favourite second choice if intercourse is not going to be good.
5. Intercourse is very variable - at some times of the month it is more manageable.
6. If intercourse is very slow or almost stationary then it is much better. Not exactly what a guy expects but there are ways of getting him off (eg squeeze, talk dirty etc) without the movement.
7. Sit on him so you are in control.
8. Boost visual stimuli as you are not keen on highly physical sex.
9. Become a star at BJs - try extras like champagne, ice (put in your mouth first for minute or two then remove) to divert from the fact you are not a star at sex.
10. Can't think of number 10 right now but I'm sure you will..................

Have fun
Put in lidocaine afterwards and lie back and relax the area and the pain will subside much quicker.
Remember that although you hurt or even bleed a little bit during sex (I sometimes got a little blood if sex was too fast) but it is not as if you are going to do yourself any real damage it will heal up again very quickly - so try not to be scared.
I don't know about yours, but my VVA was inflamed entrance to Bartholins glands so it was possible to 'bipass' the pain if sex was very slow, but any pulling would open up the gland entrance and then I would get the burning pain. If I gritted my teeth and took the pain then the pulling (even if very lubricated) would sometimes nick the inflamation so there would be spots of blood or swelling up. (I never identified what was happening till after my diagnosis as I really had no idea where the pain was coming from).
xx

LizLemonny

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Thanks!

Post  Layla2121 on Tue Apr 17, 2012 6:42 pm

Thanks, thats really helped alot. Taking things slowly has made it alot easier and although it still hurts a little its much better since i'm more relaxed than before.
I was wondering aswell if it can get worse? like if you don't try and do anything about it. Because I haven't tried anything since sex is still bearable and its only during penetration that it hurts, but i'm worried that maybe I should....has it gotten worse for you over time? x

Layla2121

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The pill

Post  xlmc89x on Thu Apr 19, 2012 9:00 pm

I would suggest not taking a birth control pill. I know it sucks and makes things a bit more frustrating, but the pill can stop natural hormone production in some women and can make vulvodynia worse. I'd suggest The V Book by Elizabeth Stewart or When Sex Hurts by Irwin and Andrew Goldstein. It can really explain why the pill isn't good for women with this condition. I don't know if it has anything to do with your pain or not but I know it was a huge factor in mine and I was told to stop taking it immediately.

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Re: Easier sex?

Post  joanna82 on Fri Apr 20, 2012 7:31 am

hello girls,
I was wondering if any of you has tried the lubricant "Yes" and what are your thoughts on it.
Apologies if I'm repeating a topic....

Next month i'm going to see a Gynec in Barcelona, she has writen a few papers on Vulvodynia, I hope she can give more advice than what i received from irish doctors (use cotton nickers and don't use soaps down there.... really?!?!?!?! i didnt know that yet, so helpfull!! and what about sex????)

I'm really frustrated right now, and so is my partner, i dont blame him. Its not only the sex that is bad, is also that i have become this angry lonely woman, i always enjoyed sex, now i dont wnat to even be touched. There's sex on tv, i change the channel. I hate trying new things, i always say no to everything that he proposes... I know it's my head but i dont know how to control it, how to change this mindset. I was reading your post LizLemmony and i was thinking, yeah that sounds good, i could do that! but i know that once i'm there in bed, i'll start getting angry and will stop..... No

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Yep not surprising

Post  LizLemonny on Fri Apr 20, 2012 12:14 pm

Hi Layla Hi Joanna

Layla - mine never got worse (got better after I had babies as well).

Joanna - mine is vestibulitis which is not as bad as vulvodynia. So bearing that in mind - at first I didn't get 'angry' because I did not know what was the matter with me and thought it was me or something in my mind - which is what doctors were saying or implying as they could not find anything wrong. So... I had nothing to be angry with. Once I had the diagnosis I did get much, much angrier so I get this.

Also I was lucky to have a very inexperienced partner so he went along with the whole thing and did not feel cheated. When I saw other men they were very put out and although some were cool with the way I needed sex to be I also knew they were thinking this was something they would not have been OK with in a long term relationship. So, again, this is not surprising.

Also I have never had pain-free sex (except as I have described) so have not 'missed' it though often I think about it.

So...... taking it all into consideration..... no wonder you and he are fed up. I think the best way back in is to wait for an occasion where you both want to have sex and agree not to have penetrative sex but explore the other possibilities with an open mind. There are some quite surprising things that guys do seem to like a lot which do not involve penetration. As a result you get turned on by this. It's really not bad.

But also I remember times when we did try having sex and ended up both pissed off as a lot of complex things happen (you don't say that it is hurting; he is trying to find out; he's too busy worrying to enjoy the sex; you are therefore basically faking it; it just gets going then you say you have to stop etc etc). We also had an agreement that we would start sex at the 'last poss minute' so that it was very quick and there was not enough time for me to resent what was happening but I could think about him enjoying it (I could keep this up for a few minutes but then it begins to get alienating).

Good luck in Barcelona!
Liz

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Re: Easier sex?

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