Guest Posts, Health, Women

Endo

June 21, 2016
pain

By Janet Frishberg

Age 12: In the afternoons when I’m bleeding, I double over as I stagger home up the hill. I hold onto a telephone pole on the way to the white-walled apartment where my mom and I live, where I can sit on the toilet and cry, trying to imagine myself out of my body, writhing on the carpeted floor, wanting to find a place of comfort. I slouch at the computer console, my feet resting on its grey plastic side, crying and playing games to distract me from the pain. It feels like my insides are a room and someone is peeling off the wallpaper very slowly, with a straight-edge razor. In the quiet apartment, alone, I know I can scream or groan as loud as I want; everyone is at work. My mom and I go to doctors, more than two, less than five. They say, “That’s part of being a woman.” And, “Sometimes menstruation is painful. You’ll get used to it.”

The pain overwrites the past. It becomes difficult to remember my body from before my body is in pain.

Age 15: I finally see the right doctor. She is beautiful which, being a teenager, I take as a positive sign. She has golden hair, flawless, well-hydrated skin, and bright coral lips. She puts her blue-gloved fingers inside me and presses down. I flinch. She’s an expert; “I can feel the growths,” she says, or maybe it’s the scar tissue she can feel. She places the cold, slippery ultrasound on my lower stomach and tells me we don’t need to do exploratory surgery, she’s almost certain I have endometriosis. (She’s a nationally-renowned expert in the disease.) She hands over a fact sheet and explains it to me. Endometriosis means the cells that make up the lining of the uterus grow other places in the body, leading to pain every month when those cells are triggered to shed. Normally, they’d be able to exit the body as blood (that’s what a period is), but since they’re in other places, like the intestinal area, they basically cause internal bleeding. That’s the pain I’ve been having. Other characteristics she mentions: infertility, increased risk of certain cancers, no known cause. “The best thing to do,” she says, typing in a prescription, “is to go on birth control pills. This might get rid of the symptoms you’ve been having. You’re still too young, in my opinion, for surgery, and we want to try our other options first.”

Taking the pills, I gain fifteen pounds in a month, breaking one hundred pounds, finally, and growing hips (less desirable) and boobs (very desirable). I spend a lot of time staring at these new breasts, pushed up and filling out bras and shirts. When my birth-controlled faux periods are still painful, this doctor says to just take the pills continuously and never stop, simulating pregnancy. Lots of her patients do this. She offers another white printed page of information. I read that the nonstop birth control will increase my chances of certain cancers and decrease my chances of others. It seems quite distant, this idea of impending cancer. What I most desire is for the pain to stop. I’m fifteen, so I want to be able to do whatever I want, whenever I want, without being victim to my body or really any forces outside my control. Taking birth control pills, passing my upcoming driver’s license test, keeping my grades good enough to stay off my parents’ radars—these are, I hope, the ingredients of some semblance of independence.

I set an alarm on my phone and every day, when it tells me to, I dry-swallow the pills.

Age 17: A month before starting college, I wake up during the night with cramps so intense that I can’t sleep. I lie in bed for hours, crying, feeling sorry for myself, or trying to relax enough to fall back asleep. The nights or days of bleeding are a constant balancing act between wanting my heating pad on me at all times, and leaving it on too long. It burns my skin, creating huge, splotchy red blisters on my stomach and thighs.

Taking my birth control pill on time, down to the minute, becomes an obsession. The precision is meant to stop me from bleeding. But every once in a while I forget, or something mysterious (hormones, these substances I can’t see that run my life) changes in my body, and the bleeding, as though in rebellion, begins again.

I start school at UC Berkeley. There are a lot of facts about my life I keep secret those first few years, endo being one of them. Some girlfriends know I’m still a virgin and they see me taking birth control but they don’t question it. If they ask why I’m waiting, I don’t mention the doctor warning me sex would most likely be painful, I just say I want to find “the right situation,” or, if I’m feeling more honest, “someone I trust.”

Age 18: Actions and circumstances I notice that might trigger bleeding include: (1) taking antibiotics, (2) drinking a few nights in a row and then not drinking, (3) flying on airplanes, and (4) getting caught in traffic on the way to my summer job waitressing at a sushi restaurant and gripping the wheel, biting my nails, sweating into my silk kimono top, worried I’ll be late and they’ll make me do sidework for six hours. Sometimes though, there’s no explanation (5), which is my least favorite option. It’s easier to have a suspected cause to blame.

Sometimes I’m calm when the bleeding begins. Sometimes I wake up having bled through a tampon and a pad, and wonder if I’m losing too much blood, if I should go to the hospital. Sometimes I catastrophize and sit on the toilet, head in my hands, staring at the cartoon frogs on the bottom of my shower curtain and feeling chunks of my insides fall into the clean water: plunk, plunk, plunk. The pieces look like raw chicken livers. Some early mornings that summer I wake up from the external bleeding or the internal bleeding at 4:00 a.m. and if I can’t fall back asleep, I’ll just drive straight to a 6:30 a.m. yoga class, because everyone who has any advice recommended exercise for everything.

Age 19: My mother and I drive up 101, near one of the car dealerships in Burlingame. I’m complaining to her about the bleeding. “I couldn’t even sleep. So fucking painful,” I say.

She’s quiet, staring at the freeway.

“What?” I turn my head left to look at her.

“I just keep thinking about what I might’ve done that caused this. When I was pregnant.” She looks like she might cry. I remember her saying this to the doctor this years ago, when we first found out. She reaches over the stick shift and squeezes my hand.

Age 20: One night, after dinner at a restaurant in the suburbs of LA, I pass out on my boyfriend’s bed on my side, one hand on my stomach, one hand covering my eyes. My uterus throbs into my temples like a highway of pain running along my body’s borders. My last thought before falling asleep is: I wonder what he’ll do if I throw up on his floor.

When I become conscious again, the lights in his room are off. He stands at my feet, removing my high heels. Then, undoing the top button of my jeans and, slowly, pulling them off.

He lifts me to sitting on the edge of the king-sized bed, his freckled arm behind my body, supporting my weight. He pulls my shirt off over my head, gently, like I do with the little girls I babysit. The ones whose mothers always say, “You’re going to be such an amazing mom one day.” I don’t tell them about the odds of infertility. “Thank you,” I say instead. “What’s going on?” I murmur once I’m naked, and he shushes me and lifts me up, carrying me into the bathroom. It’s dark except for candles he’s lit all around the tub and counters. The bath is full of steaming water and yellow light bounces off the tiles. He places me in the hot water and undresses himself quickly, climbing into the tub.

He sits behind me in the water, legs open. I lean back against his chest and close my eyes. Half-asleep still, I feel almost stoned from the pain. My chest is out of the water, a little cold. He takes a washcloth and dips it into the water, lying the cloth over my chest so the heat absorbs into my skin. He does this over and over—when the cloth gets cool he dips it in the water again, sometimes squeezing it out over my chest in a rivulet of warmth.

It’s the first time I can remember anyone taking care of me when I’m sick this way. I think, as my body relaxes into his: This is what it feels like to be loved.

Sitting in my statistics final during summer school, I realize I don’t know how to do an entire problem, panic, and within fifteen minutes I’m bleeding. I sit in a giant, circular lecture hall, hundreds of students around, feeling myself dripping blood, and with no idea how to finish the final. Until then, I’ve had an A in the class. I walk down the line of desks and approach the graduate student who’s been teaching my section all semester. He’s ponytailed, light-brown hair, serious except when he laughs at his own jokes.

“Can I go to the bathroom?”

“Actually, we can’t allow you to leave the room and come back to restart the test.”

“I really need to go to the bathroom. Urgently. I’ll come right back.”

“It’s a general rule that once we open up the test we can’t allow students to leave and then come back and work on it again. Just do your best.”

“So, what can I do if I can’t continue working on it?”

“I mean . . . I guess you should just turn it in. If you know it, you know it.” He smiles.

I sit down at the front of the lecture hall. In my mind, fuck, fuck, fuck plays on repeat. I don’t know how to solve statistics problem #2 on my final. I’m curious if I’d know the solution if I wasn’t also completely preoccupied with wondering: Am I bleeding onto this wooden chair?

I sign my test and throw it in the stack with the others. My throat hurts with unexpressed words, and I can tell I’m about to cry so I speed-walk to the bathroom. Through tears, I create a makeshift pad out of toilet paper, like a twelve-year-old, and waddle home down tree-lined Piedmont Ave, fantasizing about all the sentences I should have said to him.

This is me, senior year, well: I take twenty units at school, work part-time, and walk around Berkeley’s streets, going from theme party to apartment party to see friends. I’m obsessed with trying to find closure after my last breakup and I can’t stop talking to my ex in my head. I overanalyze any social interaction possible; in the middle of the night I write unsent letters to a friend who’s been dead for years. I drive people I love to the airport in rainstorms and teach my roommates how to make latkes from scratch.

This is me, senior year, sick: Frustrated, probably in bed, with a heating pad on. Sometimes the pain becomes so intense that I can’t read or look at my computer screen, which means schoolwork is impossible. I say no to all invitations and make up excuses so I can cancel without telling people, “I have this chronic illness…” Single, I can’t figure out how to be cared for while sick. It still seems too personal to share with pretty much everyone, so I lie, omit, or obfuscate: to work, to friends. Almost no one I know has a chronic physical illness that gets in the way of their life. Or if they do, we aren’t talking about it. I cancel on people like this: a text, an IM that says, “I’m not feeling too good.” All I want is for them to know how sick I am without having to explain myself. I’m aware, even then, that this is unreasonable, the wish of a child.

“Are you sure? You seemed fine yesterday!” they sometimes say. I don’t talk about it with people for a lot of reasons, one of which is I don’t find it interesting. Being sick is boring. “My stomach hurts,” I tell strangers, teachers. I tell men in my life, “I can’t, I’m sick,” and leave it at that. It seems obvious that people don’t want to hear about my insides. No other women I know need to walk around outside of their house talking about their reproductive organs. I hide flare-ups from even close friends who know, because they worry. In the face of worry, I become defensive: don’t they know I’m already doing everything I can think of?

The fear of the pain and the unknowns of the illness interrupt healthy stints in college. It begins with twinges in my pelvis, like there’s a jumper cable clamped onto various organs. Then anxiety sets in, creating a positive feedback loop and exacerbating the symptoms. Questions include: What will this turn into? How long? Just one day of light bleeding, or ten days of crying and sitting on the toilet with my head on my hands, waiting for my insides to slough off or rebuild themselves?

Age 21: On a whim during my final semester at Cal, I take a Buddhism course and begin meditating. Then I increase my yoga practice, going to class three times each week, convinced I can master my body this way. My mission becomes to learn any potentially useful way to monitor my internal state. I become intensely attuned to changes in my stress level, which I’ve noticed directly correlate to the onset of the undesired bleeding. One unintentional upside of managing the disease: I become so hyperaware that I can usually sense my body fill with what feel like stress hormones after only a few minutes. Then I can breathe and talk myself back into calm, because I know what might happen if I don’t. Keeping myself unstressed is the top priority. A few years later, at a high-pressure job, coworkers will praise my unflappability. I will not tell them where I learned it. I will smile and shrug, like, that’s just me! and I will wonder if they can tell I’m hiding something.

I’ve been accepted to the long-standing, student-taught Female Sexuality course, so each week I  sit in a small classroom with a dozen women on Mondays and Wednesdays from 7:00 to 9:00 p.m. Early on, inspired by their stories, I share what it’s like to live with endometriosis.

In FemSex I learn to see the structures impacting my experience, the transformation of silence into language, to say exactly the words I learned shouldn’t be talked about, but which are true. That I sometimes can’t walk when my body bleeds. That I can’t poop when my body bleeds, without clenching my teeth so hard that my jaw pops. Without smoking weed first. That sometimes when my ex and I were having sex, I had to push him off me, or grab his shoulders and say, “Wait,” because I was about to throw up from pain I hadn’t even realized I was having.

What I’d been doing for almost ten years was questioning myself: whether I was inventing the pain, whether I just needed to toughen up, whether I wasn’t taking the right pills or saying the right answer to people who asked what I meant by “sick.” In that class, instead, I begin questioning the learned shoulds and shouldn’ts.

Our course reader includes an excerpt from Cunt by Inga Muscio. I read about her visualizing herself into an abortion, using just herbs and her mind, and this puts an idea into my head: that maybe there’s another option outside of the pills, the pills that keep me on the fence between healthy and sick. The beautiful fence that allows me to finish high school, to travel in Europe, to work full-time in summers and part-time in school years and to finish college. The fence that keeps me obsessively watching for 9:00 p.m. each night, so I can take my pill at the right minute or risk a week’s incapacitation.

It changes my life, this class.

Age 22: I search online for “endometriosis” and “alternative treatments” and through this, find an acupuncturist in a fancy neighborhood of San Francisco a few miles from where I’m living. She has reviews by dozens of women, many of them with the same symptoms as me. They say she cured them, even though it’s supposed to be untreatable. I don’t let myself completely believe it, because that feels like faith, hope, a line of thinking I haven’t allowed in years.

Before calling the acupuncturist, I return to the hospital on the Peninsula where I grew up, for a come-to-Jesus talk with the doctor who first diagnosed me and prescribed the pills when I was fifteen. She’s continued her research and she remains one of the leading experts in endometriosis. I still think of her as having saved me, because she confirmed I wasn’t making it all up, the way other doctors had told me I was.

I want to tell her I was sick of the hormones, sick of being on the verge of bleeding all the time, sick of being sick, sick of being fake-pregnant. That this is unacceptable, and I want to try alternatives. I’ve just returned from working at my old summer camp, where the world was humid, green, and safe, and I didn’t spot for months. Whenever a chunk of time had passed since spotting, I’d forget about the pelvic pain and convince myself I’d be fine if I stayed on the birth control. A few days before my appointment to see the doctor, I go to the bathroom at home and see blood, bright red on the tissue like a slap across the face. I want to punch the porcelain sink.

Since moving back to San Francisco, I’ve been constantly ready to bleed and spending all my saved money on alternative treatments. Once, at a massage, the masseuse simply placed her hands on my lower back to start, and I feel myself begin bleeding. For weeks, I’ve also been physically exhausted, sleeping ten hours at night and still needing a nap in the afternoon. Luckily, my unemployment accommodates my sleep schedule; it’s the middle of the recession and I hope to find paid work or at least an internship.

The doctor and I sit in the hospital room together. She says if I’m having spotting, I need to go off the pills for a couple days, and that I’ll likely be “screaming” for a few days in pain. She says there’s no way she’ll give me an IUD. She scoffs when I mention what I’ve been reading about, says she’s never heard of acupuncture being effective for endo and doesn’t recommend going off the pill. She suggests the surgery to try to get rid of the growths and scarring; she doesn’t think I’m too young for it anymore. “It could solve things for up to a year,” she says. After that, without fail, like they have for her other patients, the growths and the pain will almost certainly come back—that is, if they were successfully lasered away at all. It’s up to me to decide if it’s worth it: exchanging surgery for, perhaps, at most, a year of no pain.

She acknowledges the pain in her matter-of-fact way, speaks to it, and pronounces me a success story. I’ve read the horror stories on the Internet; I know I’m doing well, in comparison. Because most days of the year I can walk, because I’m not constantly sedated with pain pills, because theoretically I’m controlling it. Except on the days, or weeks, when I’m not.

“I’ll think about it,” I say.

After she leaves the room, I say to myself: I will do it. I will do this for you. I will fix myself. If she wont help us, then we will do it ourselves.

At the end of November, I finally schedule a first appointment with the acupuncturist I found online, after reading and rereading the reviews obsessively, like they’re a prayer I can memorize. Pieces of them play in my head throughout the day: This was the last stop for me. I just couldnt believe it because I tried other acupuncturists!! She has transformed my LIFE.

On my first visit, she has me fill out a pain map of my body. I shade in almost everywhere, except my knees, thighs, arms, hands, and the middle of my forehead. Thank you arms, I think, examining them, astonished to have never realized they were pain-free before. One issue I don’t expect her to solve is the neck, jaw, and back pain that has been around for the last ten years or so, which feels separate from the endo, except sometimes when it feels interwoven.

She glances at the pain map and says in her Irish accent, “My goodness, lady! I’d be worried about this much pain in an eighty-five-year-old.” I want to kiss her for saying it isn’t normal.

I call my dad soon after the initial appointment, while walking across the Presidio’s green lawns. The afternoon is blinding after being inside an office all morning for the unpaid internship I’ve found at a local nonprofit. I’ve been out of college for less than a year and have almost no money saved at this point, although I work short-term gigs whenever I can to cover basic monthly costs. “I really think it’ll work,” I tell him. “I don’t know what else to try at this point.”

“What exactly did the doctor say when you went to see her?”

“She said the only other option was surgery.”

My father, the engineer, who believes in logic and numbers and facts. Not energy systems and fire and liver and tiny little needles doing magic. Who bought my first box of pads at Safeway when I was in middle school and passed out on the car ride home, exhausted, the day I got my first period. My father who has never said the word “endometriosis” to me. I give him my best pitch about the acupuncturist and then hold my breath.

“Okay. I guess. Sure.”

I’m not sure how or why he agreed to pay for it, but I know that if it somehow works, it will be the best gift anyone has ever given me.

I begin going to see the acupuncturist each week. She tells me to cut out white starches and sugar, and to add in more dark greens, red meat, and fish. She says I’m anemic; that’s why I’ve been nonstop exhausted. I lift my tongue three times each day, using a dropper to measure the herbs into my mouth. They taste like earth and spice. I let myself hope, once or twice, the smallest pinch, that life might become different, that I might one day feel healthy.

For three months I see her every week. Then I stop taking the birth control pills. It’s like strapping myself into a rollercoaster— the coming month could be exhilarating or terrible, but either way I’m committed.

One day in late February, I’m working near Mountain View. I drop off the dry cleaning for the close family friend I occasionally work for as a personal assistant. I climb back in her electric car and pause for a moment to store the receipt in the right envelope. I check my phone. It hits me, a familiar feeling: I’m bleeding. But, I’m not in pain. I haven’t taken a single painkiller that day; I didn’t even want to. I’m working and bleeding, and no pack of birth control sits inside my purse. I’m not crying; there’s no heating pad in sight. I call my acupuncturist and leave her a giddy message, telling her thank you, thank you so much.

She calls back. “I just wanted to say congratulations. This is what it feels like,” she says.

I work the next year without taking a single sick day. I find a grown-up job at a different non-profit (salary, health benefits), and in the evenings I write and edit and keep writing until I have a book. I cofound a community-based version of FemSex so more people can take the workshop; I date men who never see me folded in half in pain on their couch. I bleed and leave my bed, bleed and walk, bleed and run, bleed and poop, bleed and eat dinner in restaurants, bleed and travel. I have “pain-free bleeds,” as she calls them, throughout the next couple years, each one miraculous, each unbelievable and precious.

**This essay was originally published in print as part of the anthology Get Out Of My Crotch: Twenty-One Writers Respond to America’s War on Women’s Rights and Reproductive Health, published by Cherry Bomb Books.

Janet Frishberg lives in a bunny grey room in San Francisco, where she’s currently working on her first book, a memoir about grief. Her most recent work was published in The Rumpus, Human Parts on Medium, and Whiskey Paper. You can find more of her writing at janetfrishberg.com and find her on Twitter @jfrishberg.

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