IT HAPPENED TO ME: I Went from Aspiring Sex Columnist to Libido-Lacking Pelvic Floor Dysfunction/Interstitial Cystitis Patient

I’d discovered tricks and tips I felt the world needed to hear, but suddenly, every post-coital moment that should have been filled with bliss transformed into moments of intense pain.
Publish date:
December 18, 2014
libido, chronic illnesses, Sex,

My introduction to sex came as I shamefully admitted my penis phobia to an older, experienced lesbian friend of mine at the age of 14. The cure, she assured me, was overexposure and a systematic flooding of videos depicting penises in motion to rid me of my fear once and for all. Four hours and a pair of blood-shot eyes later, I finished up my final Internet clip, stood up and confidently announced, “I’m ready.”

Regretfully, I lost my virginity to a nymphomaniac with a huge penis and just about nothing else going for him. His painfully unrealistic expectations for his partner, and for someone of his physical appearance and stature had me striving for perfection in the bedroom at the age of 15. Two weeks into our relationship, we had sex. I wasn’t ready, but he assured me I was. So that was that. I was.

From there on out, I became a big proponent of sex, but felt obligated, as if by some incredibly flimsy sexual moral compass, to follow the man’s lead. It wasn’t until this past year that I realized I could have sex how I wanted to. I could be in control. I could be my own leader.

My sexuality mainly came to me in small spurts and massive eruptions. Some days I felt a spark of sensuality just from applying a dark shade of lipstick, and other days I had to be had. In a car, in a park, in a day care (it’s a long story). And while it took me years to out-and-out demand my sexual needs be met my way, I had finally become, without a single seed of apprehension, a woman warrior in bed. Hear me roar.

I became completely enamored with the sensuality, spirituality and strength my yoga practice had provided me with and even began teaching myself positions straight out of the Kama Sutra. I did my research and did not take it lightly. While I’d always been an innately sexual person, I had this newfound passion for exploration in the bedroom. I felt this fusing together of carnal, spiritual and sensual pleasure occupying my previously insecure body. I felt like this erotic, soft and sexual goddess. I’d discovered tricks and tips I felt the world needed to hear, and I was ready to shout it from the rooftops.

In fact, I had developed such an air of confidence when it came to pleasing both me and my man in bed that I was certain I’d make an absolutely prodigious sex columnist. I applied to open “sex and relationship” columnist positions in Cosmo, Nerve, Women’s Health, Glamour and Elle. I wrote a lengthy article as part of an application for a “Sex columnist with weed focus” job, advertised under the Denver Post’s careers section. I cleverly titled it, “Coming to Terms with Coming from Cannabis,” and explicitly remarked on my personal experiences with it. I was damn proud of myself.

But then, just under three years ago, I was rushed to the emergency room for what turned out to be ascending kidney infections. I became incredibly skittish around sexual situations for the next few weeks. We’ve all had the occasional UTI, and we’ve all been told it was from forgetting to pee after sex, right? Just want to make sure we’re all on the same page here. Unfortunately, the occasional UTI was far from my reality and it didn’t take long for me to recognize the pattern.

Every post-coital moment that should have been filled with bliss transformed, without fail, into moments of intense pain followed by sleepless nights of aching, burning and extreme discomfort. This became my norm. But I had worked so goddamn hard to establish this newfangled sexuality that I wasn’t going to go down without a fight. I frequented the local urgent care clinic, got bi-monthly antibiotic prescriptions (which then had to be counteracted by probiotics to prevent further infection), picked up over-the-counter medications and cranberry juice and hoped for the best.

I’d convinced myself I was just a chick with shit luck. Everyone had this happen to them now and again. Mine just so happened to come more frequently than others.

When I confided in my mom about my unusually frequent infections, she put her head in her hands and asked if they’d always come out positive at the clinic. “No,” I replied. “In fact it’s really weird. They always come up negative, but with some other strains of bacteria.” She looked up for a moment and shook her head.

“Well you can’t possibly have what I have," she said. "What I have is from teaching for 26 years and never being able to pee when I had to. So there’s no way you could have that.” And it was settled. There’s no way I could have whatever the hell condition 26 years of teaching could have given my mother.

After my most recent time at the clinic, where half the staff recognized me by my signature pajamas-past-noon look, the physician finally asked just how many times per year I was getting these infections.

“Anywhere from a dozen to 20 times a year, I’d say.”

She took a few steps closer to me and removed her glasses: “It’s time to see a urologist. That’s not normal.”

The urologist's office was jam-packed, and the receptionist handed me one of those buzzing pagers they give you at the Cheesecake Factory. I took a seat in the waiting room across from an elderly woman and her grown daughter who seemed to be fighting about whether or not "Modern Family" really was the older woman’s current favorite show on television. Shortly thereafter, my buzzer went off.

I waited in the exam room for over a half-hour before I was seen. Our introductions were brief, and she seemed nice enough. While she had some speculation as to what chronic condition I could might have, she insisted on a pelvic exam prior to making any conclusions. The exam couldn’t have been any longer than 45 seconds, and it was completely agonizing. I kept my eyes clenched tightly closed as I pursed my lips shut, so as not to shout out or yelp out in pain. Questions of “Does this hurt?” and “More up like this, or down like that?” and “From a scale of 1-10, 10 being the worst, where would you say your pain threshold/level is at?” were asked, but I couldn’t make a sound.

“Please stop,” I finally blurted out. “I can’t do it anymore.”

After changing back into my leggings, I sat cross-legged on the examination table. Whatever I was about to hear was, most likely, not what I wanted to. My doctor returned with the written results.

“So, Lindsey. Unfortunately, you do have pelvic floor dysfunction disorder, also known as interstitial cystitis.”

And like that, I felt any shred of sexuality I might have had left swiftly exit my body. Seeing the look on my face, my doctor quickly assured me, “Plenty of women have it. We’ll start you on Valium daily, and just, every time you’re done with intercourse you’ll take a half hour to yourself, take a warm oatmeal bath, take your medication and you’ll be done with it.”

I just kept replaying the word intercourse and wondering how in this cold, cruel world I ended up stuck with a diagnosis like this. I went from being blessed with a libido that turned me stark-raving mad if I didn’t exercise it at least twice daily to an absolutely asexual lump. I shuddered at the thought of ever opening my legs again. This is the new me, I convinced myself.

We discussed my initial treatment plan and how it would hardly even get in the way of my every day activities. "You’ll take your Valium as needed, and never on the same days that you take your Xanax," she emphasized. All right, let me just make sure I, at absolutely no point, have a panic attack on the same day as a flare up. On it.

I left the office to be met with freezing snow. I found my car, threw my prescription on the passenger seat, closed my eyes and screamed.

Not even two days later, I sat writhing in excruciating pain at the foot of my bed. I took one Valium and an hour later, nothing had changed. I took another one, and another after that. My medicine proved to be completely ineffective. I begged my mom to give me one of her vaginal suppositories of Valium, but the pain didn't subside.

The next morning, I called my doctor for an urgent appointment. I waited another hour-and-a-half to be seen, and watched as my doctor took two phone calls during the five minutes she had to see me.

“So obviously, you have more than just your original diagnosis going on. There seems to be some issues with your bladder that we’ll want to look into.”

She wrote me a prescription for nightly vaginal Valium suppositories and had me wait in a check-out line to book an appointment for a cystoscopy and a weekly standing appointment for physical therapy. I didn’t even make it out of the waiting room before bursting into tears.

The fun-loving, festival-going, concert-attending, yoga-loving girl I once was disintegrated before my eyes. Everything hurt now. Standing for too long only caused me pain. Sleep without a medical ritual and pillow or two to prop up my legs each night was no longer an option. I felt like I’d been robbed of my youth. I felt cheated. I was going to give other people sex advice. I was going to give away my secret formula for the perfect blowjob to tons of eager girls in their 20s around the country. My hopeful career had been prematurely stunted without my permission.

That night, my mother gave me another one of her Valiums before I was able to get my prescription filled. I had already taken some of my own Valium prior to inserting the medication, so I was feeling a bit tingly. I propped my legs up and let the medication take its course.

“You don’t understand. It feels like a warm lake of butter flowing throughout the entire bottom half of my body. I’m filled with butter,” I recalled saying to my partner, who asked what the fuck was going on in my body based on the correlational faces I was making. I interjected that it wasn’t a particularly enjoyable kind of butter. I didn’t want to get used to it, but I knew I’d have to. I laughed from sheer discomfort. Dissonance.

I finally had sex again since my diagnosis, and it was amazing. Granted the time spent afterwards was anything if not unpleasant. But it was worth it. And that’s how I imagine my sex life will continue to be, more of a labor of love.

I’m putting off filling my prescription until tomorrow afternoon. Partially because I can’t afford it just yet, but mainly because I’m trying to cling to any sense of sexual normalcy I might still have. I’m told that this chronic condition can become more mind-over-matter over time. That if I just work hard enough at it, caring for myself will just become second-nature.