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The Condition I Can‘t Talk About

I was dating my first boyfriend and the last thing I wanted to ask was if he had a sexually transmitted disease. I waited until I was in love. I waited until it felt right. Isn’t that what we were told to do? And yet, I was calling my mom from college, swallowing my pride to ask her if she knew what was wrong with me.

It hurt. Everything hurt. Sex was impossible. Thankfully, I have a mother who I can speak about things like this with. I asked, “is this normal?” She replied, “it’s just a yeast infection. Schedule an appointment.”

Even that felt daunting. The only conversations I had ever had about yeast infections were that women like me didn’t get them because we weren’t “dirty.”  

My mom had scheduled all of my appointments until this point. Dentist, orthodontist, and yes that dreaded first gynecologist appointment. I picked up the phone and called the university clinic.

I dreaded going, but I knew I couldn’t continue like this. I wanted to have sex. I wanted to be normal. I wanted to be a normal girl who had sex — was that so crazy?

I didn’t know how to talk about it with my boyfriend. I wanted to be upfront and honest, and also you know, sexy and mysterious. This was anything but.

When I first started having issues we hadn’t even had sex yet. How could I say, “yeah, I’m sorry I know we haven’t had sex or anything, but yeah whatever you did has ruined me.” I didn’t know if it was a ‘me’ problem or a ‘him’ problem. Really romantic stuff.

 I tried to tiptoe around it.

“So, I have been having some issues…”

“Issues?”

“Uh, uh…down there.”

From there I found myself bawling in his lap that I am not a normal girl and everything hurts and it’s broken, everything is broken and I keep getting yeast infections.

Then, the awkward part.

“I’m sorry, but can you get tested? Yeah, that kind of test. And no, that doesn’t make you dirty.”

I went to my first appointment at my university’s version of a doctor. Don’t get me wrong, sometimes they were very helpful, but other times their only expertise seemed to be in writing notes to get out of class and providing freshmen with the basics on STDs.

I just wanted to be cured really. I wanted a “fix it” pill and to go on with my life.

I was told I had a yeast infection. Easy fix.

And then, when the feeling came back in about a month, I was diagnosed with another yeast infection.

And another. And another.

I left the doctor’s office that day feeling so completely gross.

“Some people are just more prone to getting them,” they said. My mom said the same thing.

I was doing everything right. I wore Fruit of the Loom cotton undies, while my lacey thongs sat in my drawer. I didn’t use scented products. I even started taking a probiotic to prevent yeast.

Finally one of the university’s doctors suggested a culture to see what yeast I had present. It came back with little to none. Definitely not enough for a yeast infection.

She told me she had an idea of what I had and didn’t want to scare me. But she’d like me to see a specialist.

The specialist was across town, and I and my wounded pride drove to finally figure out what was so wrong.

At first, the specialist said it could be one of two things. HPV or Lichen Sclerosus. I scrambled through Google as he left the room and decided I was hoping it was neither.

He said he wanted to do a biopsy just to be sure. I knew the term, but I could not have prepared myself for the pain the numbing gel merely subsided.

The results came in. I finally had an answer and a name for the pain and discomfort I was feeling. Lichen Sclerosus. It is usually found in women after menopause. Lucky me. It is a rare chronic condition that causes white patches of skin on the body, and in some cases, the genitals. It isn’t a sexually transmitted disease. It isn’t contagious. No one is sure about the cause, although there are theories about genetics, an immune disorder, trauma or a previous infection. He didn’t know why I had it.

It can cause the architecture of the vagina to collapse. It makes sex difficult as the vaginal canal narrows, and I could lose my labia minora. I hadn’t been attached before, but I was definitely attached now.

It hadn’t done any damage yet. I was lucky. It could be stopped or only last for a couple of years. But it could also be lifelong.

I left the doctor’s office that day feeling so completely gross. I had a disorder, and I couldn’t even talk to anyone about it. What would my boyfriend think? I wondered what my mom would say. I felt disgusting and full of shame. I felt like I had done something to deserve the disorder.

I even began to think that I would never be able to have sex like a normal person. I thought my boyfriend would leave, or never touch me again.

He was supportive and so understanding. He held me as I cried. He is truly the reason I was able to cope with it. My mom scheduled me a second opinion appointment back home.

I left hopeful. I felt normal, not like the weird health case I condemned myself as before.

This doctor told me the same thing. I asked her what I am sure she thought was an odd question.

I wasn’t sure if my vagina had changed. I searched Google and found images that made me bawl at night. I would then hold a tiny mirror and look at my vagina, searching for changes in the architecture and comparing myself to the images on Google and then, to images of “normal” vaginas. I either wanted reassurance or a sign that I was different.

So, I asked the gynecologist if I looked normal down there. She laughed with this smile that made me feel like she had heard this many times. She didn’t hesitate. She said I had a completely normal vagina and if I stayed on track with my medicine, it would prevent things from changing. She said I might not even need it one day.

I left hopeful. I felt normal, not like the weird health case I condemned myself as before.

It is coming up on a year since I was diagnosed. That kind of language makes it sound like I have cancer. But when I first found out, I am sure I would have told you the diagnosis was fatal. It’s not.

I search the Internet for information about it often. Probably too often. There is almost nothing. I found a few chat groups where women had exchanged experiences. My heart goes out to those who have had worse experiences with Lichen Sclerosus. But I keep coming to the same conclusion, everyone with this condition feels alone. They feel like they are a freak. They feel undesirable and like their womanhood has been taken from them.

I found a Tumblr page run by a girl a year younger than me documenting her experience and looking to connect with others who have Lichen Sclerosus. She wrote about realizing she will never be able to have a normal sex life or even sex at all.

I would be her if I began showing symptoms a year before I did.

I reached out. I told her sex is very much possible. Yeah, there are moments when it doesn’t work and you cry and feel so undesirable. But there are also periods when it is amazing and normal. There are days I don’t even remember I have Lichen Sclerosus. With medicine and good vaginal health habits, it is not a life sentence to an awful, uncomfortable sex life.   

I am coming to terms with discussing the diagnosis. Not with everyone, obviously, but I often encourage my friends to talk about their vaginas and sex because they may feel they can’t talk to their moms about everything. If something feels wrong, absolutely go to the doctor and get checked. But sometimes you just want a casual conversation with friends like, “hey, I can’t figure out why this doesn’t feel right. Have you ever experienced that?”

And maybe if we open up and ask these questions every once in a while, women will stop feeling like they can’t talk about their vaginas.

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