Table of Contents
In several weeks, I’m turning 35 years old.
It has been 18 long years since I started to suffer from vulvodynia. For the last 2 years, I’ve been pain-free.
When I look back at that summer morning of 2001 when everything started, I see this still happy 17-year-old young woman with her still bright looking future. But at the same time, I also see her never fulfilled hopes and dreams, that became buried in pain and hopelessness.
I can’t turn back time. But I wish she could receive this letter in which I share with her some pieces of advice that I’ve learned during this still upcoming journey for her.
To calm her down and assure that everything’s going to be alright.
To encourage her to fight and never give up.
And to support her.
You’re starting a new and different chapter in your life.
Often, you will feel scared, lost and confused. I want to assure you that given your circumstances, this is normal and you have the right to feel that way.
It will not be easy to continue to live “a normal life” once diagnosed with a chronic health condition but I hope that this short letter will make it a bit easier for you.
#1: You Are Not Alone
You will often feel lonely, abandoned and invisible on your deserted island of pain.
BUT I CAN ASSURE YOU THAT YOU AREN’T THE ONLY ONE.
Others like you exist – they suffer like you and understand you. But also like you, they are hiding from the world, often in shame.
And as it’s hard or sometimes impossible for you to share it, it’s also difficult and often unimaginable for them to talk about it.
#2: Your Pain Is Real
People will doubt you and the authenticity of your invisible pain.
And it will often come from people that you will and should trust the most – your doctors.
But just because they didn’t get enough training focused on chronic female conditions, and they have no clue what to do and how to help, this doesn’t make your pain fake.
YOU AREN’T CRAZY AND IT’S NOT IN YOUR HEAD. IT’S IN YOUR VULVA.
#3: You Are Enough
There will be moments when you will feel not enough of a woman because vulvodynia will strip away this part of your soul – your femininity, your womanhood.
When you will feel not good enough of a friend when you will be canceling on your loved ones for the hundredth time.
When you will feel not good enough of a daughter, sister, mother, wife or employee.
When you will feel not strong enough, not resilient enough, not smart enough, not hopeful enough.
No matter where these words will come from; from other people or from the vicious voice in your head, please remember:
YOU ARE ENOUGH, ALWAYS WERE AND ALWAYS WILL BE.
#4: Don’t Care About Other People’s Opinions
A lot of people won’t understand, but they still will have their damn opinions.
Doctors will doubt you and decide if your pain is real or made up.
Friends will scoff at you and advise why you should be happy or stop complaining.
Boyfriends will diminish your value by establishing how often and why you should have sex or claim that you must be cheating on them.
People will judge you and call you names – neurotic, hypochondriac, liar, crazy, promiscuous are only a few of them.
Your job is to not care what others say about you. Remember this is only their opinion and if it doesn’t serve you, you don’t have to apply, follow or care about it. You don’t have to listen to anyone.
NO ONE LIVES YOUR LIFE. NO ONE IS INSIDE YOUR BODY. AND NO ONE FEELS YOUR PAIN
#5: Vulvodynia Is Not a Life Sentence
Once you get diagnosed with vulvodynia, it might feel like your game is over, as in the eyes of Western Medicine vulvodynia has no identifiable causes and no known cure.
However, the diagnosis of vulvodynia is a diagnosis of exclusion.
Which conclusively makes vulvodynia “an ugly waiting room” – in which you will be ushered in until the real culprit of your pain will be exposed.
From the moment the real reason will be discovered you will suffer from “a vulvar pain caused by, whichever cause that will be found, like lichen sclerosus” for example.
Don’t allow anyone to tell you that there is nothing else that can be done – because until the real culprit is exposed the game is still on!
And let’s be logical here – IF THERE IS PAIN, THERE NEEDS TO BE SOMETHING CAUSING IT.
#6: Open Your Mind
Finding a cause and cure will be challenging.
But again, logically, if there is pain, there needs to be something causing it. Just because it isn’t obvious and can’t be easily found, doesn’t mean that it doesn’t exist.
As Western Medicine is pretty powerless, you will need to take your health into your own hands. And by this, I mean that you will need to open your mind while researching, learning and trying new solutions.
It will require you to stretch your belief system and maybe even go beyond the physical realm into mental and spiritual ones when all else fails.
Don’t discard, criticize, and mistrust the new just because the mainstream says so. Do your own research, ask questions (in doctors’ rooms, support groups, forums – everywhere) and analyze.
Use your own brain and gut for everything.
DON’T LET OTHERS BLINDLY GUIDE YOU. By doing that, you’re taking away your chances to get better.
Always remember that just because a solution or answer comes from another culture, country, spiritual practice, century or medical approach doesn’t mean that it’s stupid, ineffective or can not be trusted. It simply means that it’s different.
#7: Trust Your Gut
Trust your intuition with everything that you’ll do, especially with regards to choices about your body, health, and life.
It doesn’t really matter from what source a solution or a piece of advice will come from – a typically trusted one or conventionally untrusted one. Whenever something will not feel right (it will feel off or wrong) – don’t do it, don’t take it, don’t agree with it.
Always listen to the still voice inside you when making any decisions. If you have a hard time to distinguish between your intuition and fear, and if there is to much “noise” in your head then apply this solution:
Find a quiet place, even on a toilet. Close your eyes, take 3 big breaths, and imagine yourself saying yes, moving forward with or applying a given solution. Notice the instant feeling in your body. If you can describe it as “expanding” (a feeling of lightness, excitement, calmness) – then this is your yes. If you can characterize it as “contracting” (a feeling of drag, despair, heaviness) – then this is your no.
#8: Love Your Body
I know that since the moment you started to suffer from vulvodynia, your body turned into a prison. You feel like it has betrayed you and has started to live its own life and you have no control over it.
There will be moments you will hate it and curse it.
It might sound counterintuitive, but what if your body is not doing this on purpose to make your life miserable? What if it’s coping as good as it can given the circumstances?
Also how many times have you seen someone getting better, happier, more motivated after being told that she/he is useless, broken or sick? Would you say, think or wish the same nasty stuff to your friend who is suffering?
Your body is not your enemy. It is an inseparable part of you. You are the only one feeling its pain. You can’t deny it.
By being mean to your body, you aren’t helping it, nor yourself. You have nothing to lose and everything to gain by trying to trust your body’s good intentions, to be nice to it and to love it.
IN THIS BETTLE, IF YOU WANT IT OR NOT YOU BOTH PLAY ON THE SAME TEAM.
#9: Don’t Give Up. Believe
There will be times you will be close to giving up.
When you will sit on the cold bathroom floor, praying for any help to survive yet another night.
When you will leave a clinic after another failed medical test asking yourself if this is what life is all about.
When you will lie curled up in an empty bed, choking on your tears and asking why he left you.
Sometimes in these moments, your faith will be the only things you will have left. Higher spirit, god, the universe – however, you want to call it.
It won’t be always easy, but, please don’t give up. There is a solution for you. If you keep going, you will find it.
You have one life to live. And you deserve to be happy and healed.
Please believe in this.