What I wish my partner, my family, my friends and I would have known about living with vulvodynia. Written for everyone who is willing to walk in a burning vulva owner’s shoes for about 16 min.

When owners of burning vulvas along with the remaining parts of society cross paths for the first time with vulvodynia, they usually will be exposed to a bland and meaningless description of this condition that sounds more or less like the following:

“Vulvodynia is a type of vulvar pain that lasts at least 3 months, occurs without a clearly identifiable cause, with the absence of any visible abnormalities. It can affect women of all ages.”

Now, if someone keeps searching, the next information she/he would find would most probably be about the different types of vulvodynia that exist, causes and treatments available, types of pain sensations and what a person with vulvodynia cannot do.

The usual list of “impossible activities” seems to be rather short including stuff like exercising, sitting, walking, having sex, or wearing jeans. However, for sufferers, this list does not even come close to truly reflecting their doomed, real life.

THE VULVODYNIA REALITY IS NOT SO SHORT, NOT SIMPLE.

So what are the real consequences of having vulvodynia?

When you begin to suffer from vulvodynia your life turns into a total mess. It’s falling apart into a thousand pieces. And it starts to completely revolve around your pain.

Everything written below is based on my personal experiences. Not everything will apply to you but I hope that if anything strikes true, you’ll find solace in knowing that there’s at least one person out there that fully understands you.

YOUR PROFESSIONAL LIFE

You Can’t Go to Work

Do you plan to go to work today and earn a living? Well, you can plan however much you want. In the end, the pain will always make the final call for you. And it can surprise you with its illogical patterns – daily. So if you’re waking up hoping for a good day but it is not meant to be – you won’t get to work. Simple.

You Can’t Sit at Work

If somehow you’ve forced yourself to get to work — as you know that calling in sick three times per week will end up with your boss showing you the exit door — then be prepared for another challenge.

The following test is to sit for the next eight straight hours. You might fidget in your chair, trying to lift up your crotch to give yourself even mere seconds of relief. Because you know that getting up every 5 minutes is not an option.

You’re Afraid of Losing Your Job

Even though you’ve forced yourself to go to work, you’ve already missed so many days that you are simply afraid of losing your job. Plus, you know that you’re bound to call in sick again in the near future. You’re afraid of losing your income which stresses you even more and makes you feel hopeless.

You Can’t Share with Your Boss

You are aware that with your chronic condition, you might not be hirable. Plus, vulvodynia is not a “simple” health problem.

Before being hired, you don’t want to reveal your health issues because it can have some bearing on the hiring decision. However, once hired and happy for the given opportunity, you feel too embarrassed and scared to talk about your intimate V problems. Congrats, you just got trapped.

YOUR SOCIAL LIFE

You Can’t Go Out

Do you plan to go out? Have you been waiting for this evening for an entire week? Wait, are you just getting a flare-up? Again? Like most of the time, the pain will decide if you can see your friends or not. You are forced to cancel. Your friends are angry, disappointed and tired of you flaking out on them yet again.

In the end, you don’t even want to make arrangements anymore.

You Don’t Want to Be Heavy for Others

You aren’t stupid and you’re aware that it isn’t fun to be around you. And you suspect that your constant and repetitive problems can become pretty heavy for others. Who likes to be around sad (and sometimes angry) people?

You Feel like You Don’t Fit

Your friends expect you to be happy, but you simply don’t feel like it. And constantly faking it is tiresome. They have other problems that, for you, are trivial, as you don’t even have your basics covered – like your damn health.

You Compare Yourself to Others

You see other “happy and normal” people, and you feel really bad about yourself and your life. Plus, you don’t want to hear others’ happy stories because they only make you feel worse.

You Can’t Enjoy Social Settings

You are on a special diet to keep your body in one piece. Some foods or drinks give you flare-ups and make your symptoms worse (like alcohol). So, you stop consuming them.

However, going out and finding a place that can suit everyone starts to be very challenging. Adding to that, you can’t really enjoy the moment or relax because you are still worried that something may trigger the pain.

You Withdraw from Your Social Life

Because of all the challenges, you’re facing when going out, it’s simply not your priority anymore. To not feel miserable and avoid all these troubles, you prefer to stay away from your social life.

You Lose Your Friends

Some people stick, some people don’t. They can become tired of listening about your problems (that are so different from theirs), your life’s constraints or dealing with your moods that fluctuate depending on the level of your pain.

YOUR PERSONAL LIFE

You Hate Yourself and Everything

Your body is breaking like china in a glass case. You want to live a normal life (who doesn’t?) but your body and its complicated “relationship” with the pain is not allowing you to do so. You have a hard time to put your pants on. To sit. To walk. And sex has become a blurry memory. I’m talking about basic stuff here, nothing fancy pancy.

So, no surprise that you hate your broken body. Yourself. And your entire life. You might even fantasize to be someone else, with a different body obviously.

You Feel Guilty and Blame Yourself and Others

You blame yourself for what is happening in your life. For your broken relationships. Then your partner for a lack of understanding. Then again yourself for not being the woman that you want to be. For canceling meetings. For calling in sick. Then also your doctors for throwing their hands up and calling you crazy. And yourself again, for your doomed destiny.

You feel like you have done something to deserve all of this.

You’re Oversensitive to Criticism

Hell yeah, you are! You constantly live on the edge. You balance between “will I survive today?” and “will it defeat me today?” Everything in your life fluctuates depending on your level of pain. Trivial comments can gut your heart. And when someone or something tips the scale, you simply explode.

You Feel Angry and Frustrated

You’re emotionally exhausted and because of this, your feelings flip from anger, frustration to even despair.

You Feel Scared and Anxious

Well, think about it. You have no clue when your body will decide to break again. You don’t trust it anymore.

You fear new experiences, as you don’t know how your body will react. What if during a trip or night out you end up with an unbearable flare-up?

You fear new relationships. Emotional involvement and emotional pain. In the end, what is the point? Why would anyone like to be with someone who can’t have sex?

You Feel Lonely and Isolated

There are sometimes hours of loneliness in your bed, suffering. Hours of you thinking what the heck you should do with your life. Hours of you wishing that you would like to be out with your friends. But you can’t. You know that people may not understand you. You don’t want to moan and be heavy.

You’re Indecisive

You don’t want to make decisions or promises anymore. Because you don’t even know if you will be able to keep them!

It may manifest during a deceptively trivial process like picking clothes for the day (and believe me, this can be damn hard). Or going on a trip with your friends. In the end, the pain dictates your plans. And you know it.

You Feel Hopeless

You face a pain of unknown cause and cure. Because of that also an unsure future. You can howl for help however much you want but all roads seem to end at the same cul-de-sac.

Doctors can’t help you. Western Medicine doesn’t invent medications for your problem. They throw their hands up and tell you “this is all in your head.” But you can feel it. You know that the pain is real.

You’re Unable to Express Your Feelings

You don’t even have an idea where to start. How the hell should you share with others what you are going through? It’s pretty embarrassing to tell your boss that you can’t crawl to work or to tell your date that you can’t drag yourself to the cinema because your vulva hurts.

You’re Pessimistic

No surprise that you are negative, and engage in negative thinking and self-talk. You worry daily for your future — even 20 minutes away from now. You don’t truly know when the pain can take over again. Because of that, you expect little or nothing from life.

You Don’t Care About Your Physical Appearance

Well, because after flare-ups that last entire nights — when you are visualizing your vulva being thrown out of the window — you really don’t give a crap how you look like.

You Feel so Jealous

You feel envious. Of other people’s happiness. Of other people’s amazing sex life. Of other people’s pain-free life.

You Feel like You’re Going Crazy

Hell yes, you feel like this. The nature of your condition is not helping you to feel any saner. Especially when doctors tell you that you are emotionally or mentally unstable (because they can’t find the cause or cure for your condition).

YOUR INTIMATE LIFE

Your Intimate Life Doesn't Exist

Your sexual life is pretty much buried. You don’t want to have sex because you’re in pain. And when the pain decreases and you even briefly consider it, you are afraid of another flare-up (which btw has happened so many times during and after sex that you don’t want to even try anymore).

Thinking About Intimacy Triggers Fear

Imagine that you have a knee injury. After some period of rest, your knee starts feeling relatively okay and you decide to run again. You run and boom. It hurts again. Now imagine this happening 100 times — in a row. Would you feel anxious at the very thought of attempting your 101st run?

You Feel Worthless as a Woman

Your sexuality is suppressed. You want to share joy, happiness, and pleasure with your partner. But you know you can’t. And you don’t know if you ever will be able to.

You Come up with Excuses to Avoid Sex

You cause arguments just before the atmosphere starts to heat up — to get away from sex. You also ignore any signs of affection from your partner. You even start covering yourself to not look sexy. But then you feel guilty and blame yourself for trying to avoid any intimacy altogether.

You Don’t Know If You’ll Be Able to Have a Baby

Firstly, you can barely put your life together. Because of that, you can’t even imagine taking care of another human being. Secondly, you can’t even have sex. And yes, there are other ways to get pregnant but… even the thought of being in pain with no meds for 9 long months is nerve-wracking.

You Receive Little Understanding from Your Partner

Some partners just don’t understand. They might think that you’re exaggerating. Or that you’re having an affair. Or don’t love them anymore. And that’s why you are pushing them away. But honestly, who doesn’t want to have super hot pain-free sex?

You’re Afraid of Your Partner Leaving You

She/he might walk away because of a lack of sex, tension, arguments, unfulfilled expectations, pain – all this crap that litters your relationship. And as a form of defense, you act up and push your significant other away, hoping that it will hurt less if you’re the one making the decision to leave. But it does not.

You Lose Your Partner

You end up with a sexless relationship. There are some partners that are ok with that. And there are others who aren’t, as sex is too important for them. And they can’t imagine waiting for someone for more than __(fill the blank). Plus, this is lack of sex is happening on top of all the other problems that assail your relationship. It is all simply too much.

You Stay Away from Any Relationships

Because of all this shit going on in your life, you prefer to stay single. It’s better than having to go through the same mess again and again.

***

Oh and you are among the 16% of us living with this condition.

For all my vulva warriors out there

Please remember, even though life is tough on you right now, you are not alone and there are ways to make your life meaningful again.

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