This originally appeared on BuzzFeed. Republished here with permission.
Almost nine months ago, I was told I might never be able to have intercourse. Now I’m trying to make peace with my medical condition—and hoping my partners will as well.
Lying on my back with my legs in stirrups, I could feel my body starting to shake.
I’d been poked and prodded in places only your gynecologist is allowed to visit so many times that day, and the spot I stared at on the ceiling was beginning to look like a pear. I focused harder on it to try to distract myself from the discomfort. Pear, pear, pear.
The doctor wheeled over to me on her wheel-y doctor stool and, moving on to the next phase of torture, informed me she was about to poke my vagina with a Q-tip.
“Do whatever you have to do,” I said. She did, gently, and all of a sudden my vagina burst into flames. I mean, not literally, but it might as well’ve been. The pain shuddered through my body, as if someone were stabbing me with a steel rod.
“WHAT ARE YOU DOING?!” I yelled. Tears had begun to stream down my face. She took her hand away from my vagina and took her gloves off. Then she turned to look at me.
“Well, there’s something going on here. It looks like you have some vulvodynia and vaginismus.” I blinked.
“Uh, what? What does that mean?”
“You have a condition that causes chronic pain in your vagina. Your vaginal muscles clench up and cause pain. You also have some pelvic floor tension myalgia. Your inner muscles clench up at the slightest touch and cause some pretty extreme pain from the looks of it.”
“Wait, what? Why? What did I do?”
“We don’t know.”
Being told that your vagina doesn’t work properly is a scary feeling. Part of being a human is that your genitals are supposed to do all of their regular genitalia stuff. But for me, things had always been a little off.
I first discovered my Vagina Problems on my very first visit to the gynecologist at age 13. My mom had brought me for my first ever pelvic exam, as moms tend to do, and assured me that I had nothing to worry about. I sat in the waiting room feeling uncomfortable and a little nervous at the thought of cold metal stirrups, like the ones I’d seen on TV medical shows.
As I spread my legs and steeled myself for the unforgiving jaw of the speculum, I tried to think about the latest One Tree Hill episode as a distraction. Then came the pain, with which I’m now very familiar. It was a staggering pain, like someone was shoving a metal rod into my insides repeatedly. I knew that pelvic exams weren’t supposed to be totally comfortable, but I was shocked that every woman could just casually tolerate something so excruciating once a year. Despite my woes, I never thought to ask my friends if they continually left the gynecologist’s office in tears, or felt sick at the thought of wearing a tampon. I never stopped to think that maybe my pain wasn’t normal. That is, until years later when I became interested in boys.
Your first time having sex is pretty much guaranteed to be awkward, quick, and sometimes painful, so when I felt as if my insides were being ripped apart during penetration, I told myself it was normal. I was wrong. As I got older, shame and embarrassment kept me from trying to be intimate altogether. I shied away from virtually every guy that showed me attention to avoid the inevitable disappointment on his end. I didn’t want to be alone with a guy in any capacity.
But the second time I met someone that I was truly interested in, I tried to ignore the pain. Maybe it’ll work, I told myself. Maybe the problem was just that one guy. I tried to push aside my hesitation and ignore how terrible I felt, but ultimately the pain of penetration was overwhelming. I couldn’t hide my discomfort.
“I don’t understand what’s wrong with you,” he said. I didn’t either.
I made an appointment with my gynecologist later that week, who diagnosed me with probable endometriosis, meaning I’d need laparoscopic surgery; the doctor would slice me open at the belly button to remove any lesions and cysts from my ovaries and uterus. Lesions, which they did find during the surgery, meant that I did in fact have endometriosis. But, my doctor reassured me, he’d removed all the lesions that he could, and presto, I was supposed to start feeling better soon.
It was hardly a miracle cure. As the weeks went by, I felt continually worse. The pain had not subsided in the least. In fact, it seemed to have heightened.
Due to my increasing lack of intimacy, my relationship with my boyfriend was disintegrating before my eyes. I felt like I had nothing to offer him physically, and as each painful day passed, he grew more and more impatient. He didn’t understand why I was refusing to try or shying away from each touch. And I didn’t really have an explanation for what was happening to me. All I knew was that every time he touched me, all I could think about was the inevitable pain followed by sheer disappointment.
Physical pain so easily brings along its good friend emotional pain. As my anguish increased, I lost my appreciation for life. Simple things became too much. I didn’t want to leave my bed for more than a couple of hours at a time; depression had consumed me and I saw no way out. I was 21 years old, living in a city as a senior in college. I was supposed to be having the time of my life while anticipating the next chapter of my life.
Instead, all I could think about was battling a future filled with pain and heartbreak, like a little raincloud was pouring down on all my chances for real intimacy. It was difficult for me to imagine a day when the cloud would ease up to a sprinkle or give way to sunshine. So while my friends took the party bus to the bars downtown, I lay in my bed and tried to watch TV to distract myself.
But at every TV show’s depiction of healthy sex or relationships, the cloud came back. It always came back. My friends eventually stopped asking me to hang out—not that I blamed them—and I stopped pretending to be OK. I was a zombie, going through life but not really living.
A couple of months went by, and suddenly graduation was just a few weeks away. My anxiety was at an all-time high. The thought of holding down a full-time job paralyzed me. I knew I had to do something. But I had long since lost all faith in area gynecologists. I figured if I wanted answers, I’d have to pull out the big guns. And the big guns was Mayo Clinic in Rochester, Minnesota.
I had first heard about Mayo through my best friend. She, like me, had health issues that had overtaken her life. When no one else could help her, Mayo Clinic did. They had diagnosed her within minutes. I knew they had the ability to do the same for me. On a particularly painful day less than a week later, I decided to take a chance and make the call. I’m not sure I had ever felt so desperate in my life. I don’t know how I managed to get the words out, but I did and successfully scheduled an appointment.
Two months later, after graduating college, my mother and I made the 12-hour drive to Minnesota, on the road—literally—to what I hoped was finally a sense of relief and an inkling of what the hell was going with my body, after all these years of discomfort and agony.
I was wrong.
The doctor wheeled her chair around as I gingerly freed my legs from the stirrups.
“There’s no definitive cause and there’s no cure to vulvodynia,” she said. “Unfortunately, I can’t tell you that you will ever be completely free of this.”
My tears came faster. I immediately thought of my ex and the way he had reacted. Was that my future? Was that what every sexual encounter was going to be like? As the hot tears turned into loud sobs, the doctor told me she would give me some privacy.
“Stop by the front desk when you’re ready. We need to schedule more appointments.”
I didn’t want to schedule more appointments. I didn’t want to be in that room. I didn’t want to think anymore. At that moment, I thought I was going to throw up. The hope that I had mustered up before my appointment had disappeared completely only to be replaced by the yearnings for love and a pain-free life that I didn’t think I would ever experience.
These terms had been thrown at me and I didn’t know what most of them meant. Was I just supposed to be OK with the fact that I couldn’t have sex? Was I supposed to be OK with the fact that my vagina hurt 98% of the time? And was I supposed to just be OK with the fact that they didn’t have a fucking cure for it?
After about 30 minutes, I had no tears left to cry. I felt exhausted. I tried to compose myself and made my way to the front desk.
That was almost nine months ago. In the past nine months, I have been to see multiple physical therapists and pelvic pain specialists. I have been sleeping with ice on my vagina, and wearing only cotton underwear. I have been using a dilator almost every day. And I have been trying to stop my conditions from defining who I am.
Truth be told, it’s incredibly difficult to this day to witness conversations about sex. It’s difficult for me to receive compliments from guys. It’s incredibly difficult to watch a show or a movie that includes a sex scene. Watching Game of Thrones makes me want to vomit, and it has nothing to do with the gore; it’s because I feel broken. It’s because I don’t think I’ll ever get to experience any of the sexual escapades that nearly every character experiences in every episode. And I can’t escape it, not even watching my favorite TV show. And it’s incredibly difficult to believe it when I tell myself that this doesn’t define me or make me unlovable.
In the last month, I’ve begun to come to terms with the fact that I have these conditions and I try to no longer allow them to rule my life. But to say that I have overcome my apprehension toward relationships or sexual activity would be a lie. It’s going to be something that affects my relationships and my life for the foreseeable future.
I’ve now opened up to more than one guy about my condition. It started with a friend, in an attempt to explain my hesitancy to date and transformed into my near plead with another to still like me despite my inabilities. Five of them said they didn’t mind, and only two of them actually meant it. The more I open up about my condition, the more I become aware of the importance of sex to so many people.
I don’t know if I will ever be able to have truly pain-free sex. Some days it seems as if I’ve made progress, and other days it feels as if I’ve made no progress at all. Even with the help of physical therapy for the pain, I will always have a mental block when it comes to sex. Sex to me has always been painful and I have always been seen as a disappointment. The thought of even trying fills me with dread. I try to believe that there are people out there who will truly love me despite my inabilities. I just haven’t met those people yet. And when I do, I know that I will be willing to try again.
I will continue to believe that there is much more to life than the ability to have sex.
And I will continue to try and convince every woman or man that if they’re struggling with something like this, they are not alone and they are not broken.
I know that someday I’ll be able to look in the mirror and like the person and the body looking back at me. And I know that someday I’ll be able to forgive my body for letting me down. I may not be there yet, but I’m closer than I was yesterday.
Lara Parker is a staff member at BuzzFeed.