Shut up!

What kind of blog would this be if it didn't get pissed off at society once in a while?
Especially when it's written by a French person :-p
So, here's my little "coup de gueule".

One of the big problems of living with V is that we are alone, and we feel abnormal.
And it's partly because we have to shut up.

Yes, you can find information all over the internet, read blogs of other women with the same or similar problems. BUT we are all hiding behind anonymity (including me). Because we can't talk about it.
A broken arm, a twisted ankle: open topic. A disfunctional vagina, not so much.
Keep your mouth shut. Be ashamed and try to mend it in silence. As if we weren't feeling bad enough already.

We're in the 21st century. Sex is not supposed to be taboo anymore. Movies, magazines... sex is everywhere. But if something's not working properly, then the taboo's back. Where's the logic here?


Many doctors don't know about vulvodynia (cf. the gynecologists-marathon we've all been through before we were correctly diagnosed). In fact, it seems nobody has ever heard of it, unless they have it or are close to someone who has it. No kidding! If we don't talk about it, who is to hear about it?

Of course you could tell me: why don't YOU do something about it? And you would be right. But I would also be right to answer: because I'd like to keep a "normal" social life. It is hard enough to feel diminished, I don't need to see it in everybody's eyes.
Especially since people don't understand. Most of the time, they're not even trying. But it doesn't stop them from judging. Just have a look at the comments on some of the blogs written by women who have V.

Maybe my neighbour has the same problem as me. But I will never know. I will have to fight alone and in silence. At least I got my family and a few friends supporting me.

Fears

It's easy to tell how it all happened. And rather easy to explain my observations, and the "practical" aspect of living with V. But it's much harder to say what's going on in my head.

Most women with vestibulodynia end up going to a psychologist. Because V can mess up your life. And because it can break your marriage/relationship.
That's scary.
And I am scared.

I said it already, I'm very bad with pain. I'm afraid of what this pain's gonna do to me. For now, I seem to have gotten used to it, it's bearable. But what if it gets worse? I'm all for staying optimistic, but still.
I have seen already how pain can do to me. It makes me kranky, I lose my self-confidence, feel less of a woman... and in the end, I often take it all out on those closest to me.

And what about my social life? I don't know yet exactly how bad the pain is, or how bad it's gonna get. Maybe I'll be able to lead a normal life, without too much changes. But it's already starting to change.
- I can't stay up late anymore. 3 hours of walking around town yesterday put me to sleep. I used to be able to do it all day and then go party all night. Now I go to sleep "with the chickens", like my French father would say.
- I can't ride a bicycle anymore. I mean, I will try, but I already know the answer. It means no spinning at the gym (and I was really counting on it to lose my few extra pounds!), and no cycling when I visit my host family in North-Germany where bikes are the main mode of transportation :(
- No more tight jeans (thank G-d I love dresses and skirts)

I put up with those changes, they are not big, except for the falling-asleep-early thing (oh, and the constant pain).
But I am afraid that more is gonna come, that V is gonna affect my life in a bigger way. Nobody can know how it's gonna evolve. Even the doctors know rather little about it. And since it's different from woman to woman anyway... Well, here's for my always wanting to be unique: mission accomplished!


These are my deepest fears. And they were not easy to express.
I know I have to be positive, to not let panic in. But I believe the best way to resist to panic is to aknowledge and talk about those fears, so that they can't take me over.

And that's the reason for this rather dark post.

"If you know the enemy and know yourself, you need not fear the result of a hundred battles." (Sun Tzu)

It has now been almost a week since the diagnosis.
In the meantime, I got the results from the lab. No infection, no bacteria.
So, I guess the doctor was right. It's not much of a surprise.

I decided to focus on how to reduce the pain and live as comfortably as possible with it. Once I've got a good grasp of that, I can focus on how to kick its ass.

Conclusions of that first week:

1. Internet's full of useful pain-reducing tipps. Makes me feel more optimistic.
However, there's no way I'm gonna stop wearing my beautiful lingerie (French resistance!) Wearing expensive organic cotton panty liners has got to be enough...

2. V + period = bad, bad combo...

3. According to many internet sources, it would be a good idea to try a low-oxalate diet. But apparently, high-oxalate foods are all my favorite foods!! :'( I'm saying apparently, cos every list I find on the internet is different.)
No more eggplants, carrots, nuts, berries, beans, no more cinnamon, chocolate (this one's really killing me) or whole-wheat bread, and so many other things that I like...
Anyway, I'm gonna try it, but if I don't feel any change, in a month or two, I get back to cinnamon and olives.

4. I have always more of a clone than a daughter to my mum, but now it's getting even worse. The girl who used to live at night more than during the day has become the girl who falls asleep at 9pm.
Funny enough, it's that little change that seems to be hardest to deal with.

5. Sports is really good! (starting slow, though: walking, yoga and pilates)

A woman's gotta do what a woman's gotta do

Waking up. Eyes swollen from yesterday's outbreak of panic.
That's it, no more panic, let's leave the baby attitude.
Parents are supportive. Friends are gonna be understanding (though I'm not gonna be able to explain that to a whole lot of people...)

So, programme of the next days, maybe weeks: finding as much information and as many tips as possible on vulvodynia and how to live with it

First reaction: PANIC

Once out of the doctor's practise, the relief of finally having a diagnostic, and the concentration to listen and remember the doctor's information and advice, make room to panic.

Constant pain? For months/years? I can't stand pain, I've always been a wuss!

Ok, at least I can still have kids and all (or I would have jumped out the window).
But rationality isn't on the menu right now. I'm just walking and crying.

At the pharmacy, again, being a tourist doesn't help. It takes them hours to register the medication under my passport number. And it's a whole lot of medication.

The V-words: vulvar Vestibulitis, Vestibulodynia, Vulvodynia

FINALLY. Finally a name.
The fourth doctor, a nice one. And a professional one.
And finally a name on the constant pain that has been mine for the past six weeks:
Vestibulitis (vestibu-what?).
He wrote it on a paper for me. I will have to look it up online.

But also bad news:
- no idea where it comes from, why it started.
- Hard to treat. Can take years, months if I'm lucky.
- and a few things are gonna change: Underwear made of cotton, analgesic cream to minimize the pain, a pill and a few other creams.

And patience. Extreme patience.