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» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
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» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

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» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

Where do I start?

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Where do I start?

Post  raven86 on Fri Dec 09, 2011 10:45 pm

Hi all, very nice to meet you! Thought I'd introduce myself, and give the abridged version of my saga.

I've had lichen sclerosis for the past 7 years or so (at least that's what they tell me it is), which went undiagnosed for 2 terrible years. I had endless doctors tell me that I had a yeast infection, or that I must have had an STD, that I had low estrogen, or that it was simply all in my head. I took anti-fungals, a number of different birth control pills, meds for herpes...and my favourite treatment, diaper rash cream.

Then I went off to university, and finally found a doctor who admitted that she had no idea what it was, and was referred to a obgyn who specialized in skin issues. The Dr. immediately diagnosed me with LS (and eczema) and prescribed cortico-steroids for long term treatment of LS.

For those first two years, I had no idea what was wrong with me. I was raw, itchy, cracked, morbidly embarrassed, and in serious pain. Not to mention incredibly stressed from my first year of university and living away from home. It got to the point that I tried sleeping with mittens, and even considered handcuffing myself to the bed, to stop night time scratching. I couldn't pee, and at that point I didn't even dream of having sex.

As a result of scarring (from LS and eczema going untreated), I developed nerve problems, best described as vulvodnia. My gyno prescribed me topical antidepressants and lidocaine (which I used every night via cotton ball up my who-ha), and physio and biofeedback.

My LS has been in check (relatively) for the past 4-5 years, but I still struggle with vulvar pain, and the emotional legacy it has had on me & my wonderful boyfriend of 8 years (all this started about 6 months after we started dating!). He is amazingly sympathetic, understanding, and patient, but as a result of the pain from penetration we only had (extremely painful) sex a handful of times per year. While we are best friends, and close in every way, we are now totally awkward when it comes to sexual intimacy. We even stopped kissing because I would clam up and get anxious, thinking it was going to lead to sex.

I COMPLETELY relate to many of you when you describe yourself as feeling broken, frigid, or completely a-sexual. Its hard to put into words the impact that LS/chronic pain has had on my psyche. For years I've had absolutely zero interest in sex, or even sexual thought, and I beat myself up for it.

Now, we are talking seriously about getting married and trying to work on our intimacy, and re-teach our selves to be sexual. This ain't easy! So...if anyone has advice on how to 'get back on the horse' after all these years...it would be greatly appreciated!


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Re: Where do I start?

Post  ButterflyLiz on Sun Dec 11, 2011 7:32 pm

Hi Raven! *waves*

I’m Liz & I suffer from vulvodynia. I’m also in a long-term relationship and have been with my guy for four years. I’ve never suffered from LS but it sounds horrible. I feel for you having to go through all that. I’m glad you’ve found relief from it somewhat now.

I think “emotional legacy” is the perfect phrase for what vulval pain leaves you with. It really hits at you hard doesn’t it. I had a few years where I was pretty much asexual. I think it’s a coping mechanism, and quite a sensible one from your body’s perspective if you think about it. However, I did manage to reclaim some kind of sexuality for myself and thought I’d share some of my story in case it helps.

I was with a different partner when my v first came on & then went through my “complete lack of interest in sex” years. I still did what I could to keep him satisfied sexually but wasn’t remotely interested in anything for myself. He made me feel guilty about the whole thing and wasn’t interested in regaining intimacy slowly – it was pretty much penetration or bust (the whole dynamic of the relationship was a bit messed up to be honest!).

Once we had pretty much given up on each other, I came to realise that my whole goal was messed up. Yes, I wanted to be a girl who could have sex, but even more importantly, I wanted to be a girl who felt *sexual*. After all, if the first is to happen and be pleasurable, you need the second to be true. After we ended our relationship, I felt sort of free to find myself again. I always think of it as starting again from scratch, as if I was a virgin all over again. I’m not suggesting you end things with your guy, btw, he sounds really supportive. But I would say if you’re going to take this journey, make sure you’re first and foremost doing it for yourself.

So…I figured out what actually turned me on (I read and wrote loads of erotica – don’t be put off by its reputation, there’s loads of good stuff out there!) and what I considered would be an acceptable level of sexual activity if I got into a relationship again.

And then I got into a relationship again! It has certainly been different than it would have been without the v pain but not all for the worse. In fact there has probably been more thought and communication than in a “normal” relationship. Sometimes we’ve been able to have full sex and sometimes not. Sometimes I’ve felt really sexual and sometimes I haven’t. Sometimes I need us to have the understanding that I’m going through a flare-up and can’t even entertain the idea of sex, or that I only feel comfortable doing certain things. It builds my confidence to be able to set the boundaries which in turn helps me to relax and feel sexy.

Take it slow, for sure. Start with back massages, holding hands, kissing & cuddling. This may sound silly but bear in mind that at the moment you’re basically starting from zero again, building up trust and physical intimacy and that takes time, especially with the added complication of pain which may rear its head at inopportune and unexpected moments. Also, you need to throw out this image the media force-feeds us of the mythical, constantly sexually available woman. That’s a lot to aim for for anyone and is certainly never going to be my reality.

Also, it may sound obvious but keep doing what you can to reduce your pain. Less pain = more space for sexy thoughts Smile

Take care of yourself and best of luck


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Re: Where do I start?

Post  raven86 on Mon Dec 12, 2011 2:09 am

Thanks for your story Liz. We did take penetration off the table for a month or so and that really did help me mentally (not that we were having sex at the time anyways!).

At this point, I'm struggling trying to rediscover my own sexuality again. Perhaps I'll have to do some reading!


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Re: Where do I start?

Post  ButterflyLiz on Mon Dec 12, 2011 6:23 pm

Yes do, I’m a big advocate of erotica!! Reading it on your own totally takes the pressure off and helps get you back to the idea of sex being for fun. Get on Amazon and read some reviews to minimise your chances of getting something naff (maybe start with an anthology so that you can read a range of different authors). There really is something out there for everyone, from romance to sweet stories for couples to total kink & everything in between.

Also thought of something else; get back in touch with your body in a general sense too. Ever since my “reawakening” I try to do some kind of physical activity that feels good every week (beside sex lol). I started off hardcore with martial arts, then got sexy with bellydancing & burlesque, and now I have fun with zumba & relax with yoga. It’s great to be able to relate to your body in a positive way & I found it helped me to get in touch with myself again.


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Re: Where do I start?

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