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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

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: 1

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


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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ButterflyLiz

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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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