In April of this year, I went to my doctor’s office. I thought I had a UTI. I knew the symptoms; I’d been getting them since I was 16, long before I was sexually active, but no doctor had ever told me it could be anything else.
One Monday morning, I woke up early to drive to a 24 hour pharmacy to get pain medicine before working a 10 hour shift at my job. As I checked out, the cashier, an older man with graying hair, said “wow someone had fun this weekend.” I was humiliated. I grabbed my bag and walked out, too ashamed to report him.
I remember begging my friend to take me to a pharmacy in California before I got on my flight back home. I was terrified I’d have to spend the entire flight in pain in the bathroom, alone, annoying everyone around me.
This had been my life. I joked about it. I wrote an article about it for a popular satire site. I pretended to be very tough and cool about it. Until the day in April, when the “UTI” wouldn’t go away. I was no longer tough and cool. My bladder felt like knives, working was hard, hanging out with friends was hard, even existing meant pain. I had tried to ignore it, taking medicine and drinking tons of water and cranberry juice. It came to a head the night of our local comedy festival, everyone was drinking and having fun and I left the headliners act, yelling “I’m sick!” as I ran down the hallway trying to avoid a puddle of bright orange pee from appearing and ruining everyone’s night. My boyfriend, very tipsy on straight whiskey and VERY CUTE, made me promise I’d go to the doctor. I agreed.
So I sat in the cold office, my primary care doctor was out of town, and I was seeing a different doctor in her office. He was frustrated because my urine showed no signs of infection. Has this ever happened to you before? I nodded. Are you prone to urinary tract infections? I nodded again. Do you have IBS? Another nod.
“I think you have interstitial cystitis.” I didn’t know what the last two words of that sentence meant, just that they had a lot of vowels and t’s, but it felt like an answer to something that plagued me my whole life. So I felt relief… for about half a second until I had to pee again. He prescribed me some pain medicine and gave me a referral to a urogynocologist, more vowels. I’m wheel of fortuning my vagina.
And then I googled because hello this is 2017. Interstitial Cystitis is also known as Painful Bladder Syndrome, a very uncool alias, hey doctors have you ever heard of Batman? And after I googled, I cried. I cried for what felt like four days straight, but was really maybe only an hour until my (again very cute) boyfriend could get to my apartment and make things seem okay. You see, the easiest way to ease interstitial cystitis pain is to give up all of the fun things that I loved, caffeine, (goodbye 2 you Diet Coke I hope you remember me fondly also shoutout iced coffee I still love you), acidic foods, anything spicy, curry, tomatoes, citrus (brunch without mimosas??? Speaking of…), booze, aged cheese, chocolate, anything fermented. I got a small list of what I could eat. Oh yah, and sex became almost impossible and when it was possible it became an ordeal that required preparation, lots of preparation and lots of coconut oil.
I began to follow this diet that Satan had crafted specifically to torture me. I learned to cook foods that I could eat and also enjoy, even though they had the flavor of soggy old oatmeal. I took time off from comedy. Though maybe not enough because I did have to stop a sketch rehearsal to cry because I’d drank a sparkling water that my bladder did not like. People love when you cry in the middle of comedy, very funny, lots of laughs. I became good friends with my heating pad. Too good of friends, I burned the skin on my stomach into these spidery patterns, and the heating pad and I went through a conscious uncoupling. I tried to rest. I apologized to my dog for not being able to take her on runs because there wasn’t a toilet every few steps of our favorite trail. She seemed to forgive me, but I can’t be sure because well, she’s a dog.
Then, I saw a specialist. She was amazing. She looked like an old feminist who lived in an attic but instead of giving me a copy of “sisterhood is forever” and some dank weed, she gave me a plan. There’s no cure of IC, but there’s hope for remission. She looked at my bladder and then at me and said “wow you must be in pain, and so young” and I felt so goddamn validated. She cared that I was 28 and couldn’t have comfortable sex. She cared about a woman’s ability to enjoy sex. As someone who was taught Sex Ed in Texas and spent her life being represented by Republican lawmakers, I was taken aback. Women’s sexual health matters? It does. I spent the next two months going to her office once a week and getting medicine injected into the lining of my bladder, hoping to repair it. I got way too familiar with catheters.
After I started feeling better, I started pelvic floor therapy. My body had been through trauma because of the Interstitial Cysittis, the muscles of my bladder were tense all the time. I knew a guy in college who was so muscley he couldn’t get through the college bus doors, he had to turn sideways. That guy was my bladder all the time. I got a little machine I could use at home to send pulses through my bladder to try to relax those muscles. I spend fifteen minutes a day pretending I’m a mad scientist as I shock the shit out of my bladder. 1 in 4 women suffer from some type of pelvic floor dysfunction at some time in their life, but we don’t talk about it because it’s tough to be a woman whose not sexy! sending electric pulses into your body for science is only kind of sexy.
I wish this post ended with I’m completely healed. I want to give you that ending so badly. I want to give myself that ending and my VERY cute boyfriend that ending. But, I’m not. I found some helpful medicine so I can drink Chardonnay and light beers. I got very good at cooking my own IC friendly pizzas. Love 2 garlic sauce for keeping it real. I still mainly drink water, so my body feels 190 but my skin looks 12. But most of all, I’m feeling better. I have access to healthcare, money for treatments, and the ability to rest if I need it, which isn’t true of every person that gets this disease. Chronic pain is hard and debilitating and sometimes feels helpless, and at times I’ve felt all of those things, but for right now, I don’t.