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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

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: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

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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!

raven86

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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

xx
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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!

raven86

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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.

xx
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Re: Where do I start?

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