Jordan's Story: To All the Boys I Haven’t Loved Before

I wish you knew.

I wish I could tell you. I wish I could explain what was happening. How do you explain what’s happening when you yourself don’t even know what’s happening?

I wish things were different. I wish I could have given you all of myself. But after all the fighting, I had nothing left to give.

What I wish I could have told you, boys, is that I have congenital neuroproliferative vestibulodynia. (Say that five times fast.) Congenital neuroproliferative vestibulodynia – I’ll just refer to it as vestibulodynia – is a condition of the vestibule, the tissue surrounding the vaginal opening. There are too many nerve endings in my vestibule, so any time that tissue is touched, such as upon vaginal penetration, I feel pain. In anticipation of that pain, the muscles in my pelvic floor reflexively tense up. This tightening leads to more of the very pain it intended on protecting me from, and then more anticipation of pain, and so the cycle continues.

Here’s what that means for me:

When I was 12 years old, I got my first period. I tried to insert a tampon. It didn’t work. So I waited until my next period, and I tried again, and again, and again. It felt like I was pushing the plastic applicator against a wall even though I knew exactly where the opening should be. After a few years of these attempts, I brought it up with my pediatrician. You aren’t comfortable with your body, she said, after putting a finger inside me and concluding my anatomy was normal. You should try masturbating.

My mother took me to her gynecologist. After this physician, too, stuck a finger in and told me I was normal, he forced a tampon inside me as I lay on the examination table, legs spread, holding back tears. Then he made me take it out myself. I had a panic attack, but at some point was able to extract the tampon. There was blood in my underwear after that appointment.

At this point, I all but gave up. I assumed things would get better as I got older and began sexual relationships. You aren’t comfortable with your body. There’s nothing wrong with you. You’re normal.

In high school, I started hooking up with boys. I remember the first time I got fingered. I was intoxicated and I remember the night only in bits and pieces, but I will forever remember that pain as vividly as if it had happened yesterday. We had been drinking, and he was attractive, and I wanted him, but when I left his bed to use the bathroom, there was blood on my toilet paper. There’s nothing wrong with you.

I concluded that this was just the way things were. By a flip of a coin, sexual activity meant pain for me rather than pleasure. So I went through the rest of high school giving and giving and expecting nothing in return. And I still couldn’t even use a tampon. You’re normal. There’s nothing wrong with you.

After graduation, my friend and I decided I should lose my virginity to him. It wasn’t until much later that I realized he gave me about as much respect as I demanded for myself – zero – but that didn’t matter at the time. I liked hooking up with him, and I trusted him. Most importantly, I trusted him with my body. Much to my disappointment, it was not physically possible for him to enter me. It felt like I was being ripped apart; I had never felt such excruciating pain. You’re normal. You’re normal. You’re normal.

This, for me, was the final straw. I was tired of this inexplicable pain getting in the way of the experiences I wanted to have. My own body shut me out of a world that I so badly wanted to be a part of. It wasn’t fair, and none of my friends seemed to be having remotely similar issues in their sex lives. So I took matters into my own hands.

Over the past four years, I have been met with limited success, in spite of my relentless pursuit of the healthcare I need. I have gone through five gynecologists and two physical therapists. I have pored over books on sexual pain, desperately searching for answers. I have tried kegels, dilators, hormone cream, numbing cream, Valium, deep breathing, stretching, lubricant, and antidepressants. Much of my college experience has revolved around doctors’ appointments crammed into my schedule alongside classes, extracurricular activities, and social events – seemingly to no avail. I used to try to explain to boys what was wrong with me, but eventually, I just stopped.

Having vestibulodynia means feeling like you’re trapped inside your own body and you’re screaming but no one can hear you. It means being shamed into silence. It means trying to accept that this is the body you’ve been given and there’s nothing you or anyone else can do about it because science just hasn’t gotten there yet. It means living with pain that makes you feel less than whole. It means suffering alone – completely and utterly alone.

Finally, as a senior in college, I have found real help. My sex therapist, who I see weekly, referred me to a urologic surgeon who gave me a definitive diagnosis – and hope for a solution. A few days after I graduate, I will be undergoing a procedure called a vestibulectomy, which means my hyper-sensitive vestibule will be surgically removed. Some more physical therapy will be necessary in order to retrain my pelvic floor muscles, which will still be expecting pain, but it is an enormous relief to know that, at last, after ten years of fighting, I won’t need to fight anymore.

I know I shouldn’t let my disorder define me, but how can I not when it affects every part of my life every single day? Grappling with something so intimate really does a number on your sense of self-worth. I think, to some extent, I’ll always struggle with feeling like I am not enough.

And so, boys, that’s why we didn’t. Why I couldn’t. Why I flinched when you touched me. Why I self-destructed as our relationship progressed, if it made it past a one-night stand.

I wish you knew. With all my heart, I wish you knew.

Thank you for sharing, Jordan. I appreciate your honesty and openness. I’m hoping your surgery goes perfectly and that you are pain free soon!!