What I have figured out about this condition

Again, it's been about a year since the last time I wrote in here. A year and a few more guys-fiasco. If karma does exists, I must have been really, really bad with some guy in a previous life.

As for V, well, I have learned to live with it. Fortunately, the pain is now much more bearable than it was at the beginning. All the tricks I've been using seem to work. Of course, sometimes, I get a pain flare and I'm in for a few uncomfortable weeks but I've learnt to just wait patiently until it goes back to normal. And even in those times... I recently realised I developped a much higher tolerance for pain. Well, for this kind of pain anyway (but usually I'm still a wuss about unknown kinds of pain!)

I am still not getting any treatment, though. There are only 3 gynecologists who specialise in vulvodynia in this country, and they're all in the south-west, whereas I'm in Berlin, and as a student I just couldn't afford the trips. Moreover, I'm still traumatised by the effect the last medication had on me (the migraines, the tiredness...), and I'm just too afraid of the side effects. So, unless the pain gets worse again, I guess I'll stay like this, like a tightrope walker, trying to keep the balance in order not to fall on one or the other side.

A few of my (girl) friends know about this, but most of them don't realise what it means. My family also doesn't really realise what it means, and I've given up trying to make them understand, because I think they don't want to. I mean, what parents want to hear their child is constantly in pain?

What has been going on this past year

It's been over a year since I last posted here, I wish I had written but I simply couldn't.
I don't know if anyone will be reading this, after so long, but I would like to explain what has been going on.

I have spent the last year with a big fat depression. Accompanied by really bad health issues which seemed to have no explanation and are now slowly going away (so, I guess, psychosomatic symptoms it was).

Now I am finally slowly getting out of the hole.

I am also in therapy, not a very intensive one, but I do go to a therapist, and it has helped. And now that I feel better, I plan to bring up the subject of V in one of my sessions.

Pain doesn't always come from the same place...

It's been over two months since I left Tel Aviv. Things haven't really moved on the V-front.

I went to see my doctor. Of course he had never heard of vestibulodynia, or vestibulitis, or vulvodynia. I'm starting to wonder who has.

Still, seeing him has brought a big change: he changed my birth control back to what I was taking before last January, when a gynecologist gave me some very lightly dosed pill (those are supposed to be better for younger women but I've always needed a higher dosage of hormones).

Result: in less than a month,
- I got much less tired than I was before, no more falling asleep at 4pm when I got up at 9am!
- I stopped being hungry all the time,
- and of course I lost weight
- fewer mood swings (those were really bad, and made even worse by the pain!!)
I should have guessed it was the hormones, I was like a pregnant woman but without the baby

Since nothing's sure about where I'll be in the next months, I still haven't made an appointment with a gynecologist (in this country, you need to make it months in advance), so no new treatment.

However, the tricks I've been using (not eating high oxalate food, wearing only skirts etc.) still work quite nicely to reduce the pain. It's nothing like it was at the beginning!

So, summary of those two last months:
- pain induced by V: ok
- pain in my little heart: let's not even talk about it...

Shopping :D (one of my favorite hobbies...)

Woohoo, yesterday it was shopping-time!
I seriously needed that, after all that happened in the last two weeks (leaving Israel, putting up with the depressing weather...)

Found what I was looking for: some new shorts, to replace the old ones which I have to put aside (or given to my sister and my mother, since I'm not able to wear them anymore and let's be honest, I probably won't be able to wear them again ever). I was amazed to be able to find shorts which are not made of jeans, and cut in a way that does not put pressure on my sensible spot BUT still look cute and even sexy.

Also found some nice new skirts. Quite short, but still long enough to be worn outside of the house

I am still mourning my jeans, though... Shopping just gets a bit harder when you can't buy trousers or (most) shorts and there's even a lot of shirts that I can't buy anymore coz they'd only look good with pants!

However, finding cotton panty liners seems to be impossible in this country - I had to order them online.

Physiotherapy (2)

Ouch.

Today, for the fiftieth time, I decided that I was gonna start again with the exercises that the physiotherapist gave me. Except this time I really did it. And: ouch. I am sure it is good for the long-term, but in the short term: I have to touch the sensitive part and that just doesn't feel good :(
But the exercises with the pelvis muscles seem to give me some relief, even after just a few of them. So, that's positive!

How V has changed my life in the past few months

A list of all the small (and somewhat less small) changes that have occured in my life in the past few months, due to V:

1
I haven't worn trousers or shorts in 5 months!
For someone who loves jeans, it's a tough one. Fortunately, I always loved skirts and dresses, so, that one's not so hard. Also, I decided I would buy some shorts and trousers that are not made of jeans and are not putting pressure on my vagina. Let's see what I'll find. I'm really worried about next winter though, because if you can easily wear a skirt in the winter in Tel Aviv, Germany's gonna be another story...

2
I'm such a sleepy head!
8pm and I would already be ready to go to bed, but lately I manage to fight my way until 10 or 11. Not sure that one actually has something to do with the V, but it did start around the same time.

3
No more chocolate!
I read something about a low-oxalate diet and I tried it out. I decided to start slowly and only to stop eating the high oxalate foods. Well, that's a pretty long list. And it's mainly stuff I loooove. The worst was the chocolate. I was so addicted to chocolate! I replaced it with coconut and white chocolate...
I was kind of hoping that diet wouldn't work, so I could start eating all this stuff again, but it actually works! Well, it works but only concerning the urinary symptoms. It's a huge relief, not feeling all the time like you have a bladder infection. But the price to pay is high, and sometimes I just can't, and then the pain comes back.

4
No more biking (so much about starting a spinning class...), horse riding (ok, I almost never do that anyway), and rarely going to the pool (the chlore gives me some kind of allergy)
Oh, and big fire down there after 15 minutes in the Dead Sea...

Only 1,5 months but so many changes: Treatment

So many changes since my last post.

To start with, I had to stop my treatment.
- The doctor gave me pills to take once a week. He gave me 5, and gave it to understand that I should come back in 5 weeks so he could prescribe more. But I didn't go again. Too expensive, without medical cover.
+ after each pill I was just so tired I had to spend a day or two in bed
- He also gave me oestrogene cream, which, according to my physiotherapist, was absolutely the right treatment - except it gave me terrible headaches, bordering on migraines.
So, after a few weeks, I had to stop taking it.

But I also went to a physiotherapist. Actually, as far as I know, THE physiotherapist in this country who is specialised in vulvodynia and vaginismus. She is also a sexologist, so she tried to help me look into the psychological side of my problem. She was really amazing!
        Because of my insurance-situation, I could only come to one session, and she was very understanding about that. So she examined me, although she said she doesn't usually do it on the first session. She showed me the different parts of my vulva (interesting how little most of us women know about it, until a few months ago I didn't even know where my clitoris was!), and confirmed what I've been thinking for a while, after reading so many other blogs: my case is not too bad.
        On my request, she gave me some exercises to do at home. I bought almond oil and started doing them. And I felt some improvement already. But I have to admit: after a few days, I just stopped doing them. I can't explain to myself why, every day I think: today I'll do my exercises, and then I don't.