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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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: 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: 6


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.

xlmc89x

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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

joanna82

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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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