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...
May 25, 2012
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.
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.
May 21, 2012
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!
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!
May 14, 2012
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...
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...
Mar 27, 2012
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.
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.
Feb 6, 2012
Roller Coaster
I'm on a roller coaster.
A week ago, although I had my period and everything hurt a bit more than usual, I was feeling much better. I felt strong, I was optimistic. I read blogs of other women and I built the illusion that my pain was much smaller than theirs. I even started thinking about treatment. I felt so good, I wanted to write a whole post about it.
But then, the period stopped, and things changed.
First of all, I had to start the treatment again. Putting the cream on the sensitive area (the "vestibule") was so painful... I just kept crying and crying.
So much about my pain being smaller than other women's and me taking this "condition" so well.
It's what they call DENIAL.
Since then, I have too often felt depressed. After a rather difficult week-end, I got back on the way up yesterday. But I still feel vulnerable, stressed about the most stupid and insignificant things.
A week ago, although I had my period and everything hurt a bit more than usual, I was feeling much better. I felt strong, I was optimistic. I read blogs of other women and I built the illusion that my pain was much smaller than theirs. I even started thinking about treatment. I felt so good, I wanted to write a whole post about it.
But then, the period stopped, and things changed.
First of all, I had to start the treatment again. Putting the cream on the sensitive area (the "vestibule") was so painful... I just kept crying and crying.
So much about my pain being smaller than other women's and me taking this "condition" so well.
It's what they call DENIAL.
Since then, I have too often felt depressed. After a rather difficult week-end, I got back on the way up yesterday. But I still feel vulnerable, stressed about the most stupid and insignificant things.
Jan 31, 2012
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.
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.
Jan 30, 2012
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.
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.
Jan 29, 2012
"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)
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)
Jan 24, 2012
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
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
Jan 23, 2012
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.
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.
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