Body Talk Page 11

  Every person on this earth experiences pleasure in subtly different ways. The keys to making sure that everyone has a good time are honesty, an open mind, and communication.

  That’s all for now, folks. Be healthy, be happy, and don’t be afraid to reach out to your friendly neighborhood urologist if you have any more questions!

  Cry Like a Girl

  by Kate Hart

  “If it really hurt, you’d come up off the table when I pressed here.”

  It did hurt. I’d just confirmed that by saying, “Yeah, it hurts.” Had I realized getting further care depended on my level of histrionics, I might have put on a better show.

  But that’s not really my style, and besides, I was too tired to shriek and writhe in pain. It had been a week since my surgery—my sixth overall and my third to remove endometriosis. Recovery was not going well, and even if I’d had the energy to launch a full-scale pain production, I couldn’t breathe well enough to scream anyway.

  This doctor was in the room only because I’d already done something out of character: I’d cried when the resident said she couldn’t help me. They were tears of frustration and rage, not pain, but they’d convinced her to bring in the head of the department. Both of them were filling in for the two other doctors who’d actually performed my surgery the previous Monday. I’d come to their clinic, with its more specialized expertise, in a bigger city, hoping for answers that multiple gynecologists at home couldn’t provide.

  Instead, my stomach had swollen to the size of two watermelons after the surgery, so enormous that on Tuesday morning, my hometown emergency room had rushed me to a bed, thinking I was pregnant. I was diagnosed with kidney failure, treated for two days, released, then readmitted on Saturday when it started all over again. The ER told me that no doctor was going to want to take responsibility for another surgeon’s patient—their goal was just to stabilize me so that I could make the ninety-minute drive back to the city.

  And now, after an exhausting week on and off a catheter, a decade of chronic pain, and a lifetime of trying to be tough, I wasn’t wailing or moaning. I was telling them very plainly that I’d been through multiple surgeries before, and this level of recovery pain wasn’t normal, nor was the inability to pee on my own.

  But they couldn’t hear what I was saying. “We can’t give you more painkillers,” the doctor said. “Opiates are constipating.” The fact that I hate pain pills and didn’t want them in the first place didn’t seem to matter. They were convinced my problem was a run-of-the-mill digestive issue, anyway. “Your best bet is to go back to the hotel and take more laxatives.”

  “She tried that last night, but it didn’t work,” my husband said. A sad truth of my experience being a female patient is that bringing a man with me is often helpful, and after months of attending appointments, he knew the drill .“She spent the night in the fetal position on the bathroom floor.”

  “Well,” the doctor said, “I’m not sure what else to tell you.”

  “At what point do we take her to the emergency room?” my husband demanded. “Because that’s where we were headed when you opened up this appointment.”

  “When the pain becomes unmanageable,” the doctor said.

  “That’s why we’re here,” I said through gritted teeth.

  “Oh.” The doctor glanced at the resident. “Well, I guess I could admit you to the hospital,” he said, as if that would convince me laxatives really were the way to go.

  An hour later, I had a bed and an IV drip with a non-opiate painkiller. Blood tests revealed my kidneys were failing yet again—and as a side effect, I’d developed an obstructed bowel that no amount of Miralax was going to cure. It was several more days before a urologist finally ran the right imaging test and discovered the surgeon had burned a hole in my bladder.

  On Saturday, I had surgery number seven.

  “It’s nothing personal. We just wanted to take a smaller trip without all the whining.”

  My senior year of high school, my friends and I skipped the stereotypical Panama City Beach spring break and drove to the Havasupai reservation in Arizona, where we backpacked to Havasu Falls. I’d grown up camping and fishing, but I’d never backpacked before, much less hiked twenty miles. There were ten of us—three girls, seven boys—and only two of us had technical wilderness training, but we survived the trip. I lived on trail rations, carried a pack, slept on the ground, shit in the woods, and alongside my best girlfriend, conquered the almost-vertical last mile back to the canyon rim. As far as I knew, everyone had a pretty good time, and I was proud of myself for making it through.

  Until a few of the guys planned another trip that summer. And I was not invited.

  Because of the whining.

  Only one girl was deemed “tough enough” to accompany them, a friend who hadn’t gone on spring break. She was tougher than I was, no doubt—so tough that when her new boots caused extreme blisters, she kept hiking without complaint until her shoes filled with blood. When they got home, the boys waxed rhapsodic about what a badass she was . . . and, behind her back, said it was a good thing she didn’t get an infection or gangrene.

  The following summer, they took a boys’ trip to Wyoming. No girls allowed.

  Let me be clear: these guys are still some of my closest friends. As teens, we were all swimming in the same toxic sea of patriarchy and sexism; as adults, we’ve found our ways to the other shore. We’re godparents to each other’s children, attendants in each other’s weddings, and executors of each other’s wills. I even married one of them, despite the fact that he tagged along on the all-boys trip, where they were almost eaten to death by mosquitoes. Which I still think they fully deserved.

  “If this was a spinal headache,” the doctor told me after I gave birth, “you’d be sobbing in pain.”

  My hospital room was completely dark because opening my eyes was torture. “This doesn’t feel like my usual migraines,” I said. I couldn’t even bend my neck to look down at my second child as I held him.

  “Well, spinal headaches can be a side effect of having an epidural,” he said, “but that can’t be it. You’d be throwing up if it was.”

  I wasn’t sobbing, and I wasn’t throwing up. I neither cry nor barf easily. But I was in the ER the next day, nursing my newborn while we tried to convince yet more doctors that I needed treatment.

  You may be noticing a pattern here.

  My husband and I were the first of our high school crew to have children. We had get-togethers when people came home for the holidays, and while whipping out a boob to feed my kid in front of everyone made me hyperconscious that I was decidedly not “one of the boys” anymore, something about having let half the hospital look at my nether regions during the course of pregnancy had made me a little less self-conscious overall.

  Besides, having had an emergency C-section meant I got to tell everyone about how the doctors piled all my internal organs on my chest during the surgery.

  Sure, I was just lying there, but it still seemed pretty badass.

  It was easier for them to understand than the challenge we’d faced to get pregnant in the first place. After years of taking precautions against the terror of getting knocked up, it was a shock to realize my body actually sucked at the task. Clinical depression had already forced me to reckon with the fact that no amount of effort or focus could force one’s brain chemicals to behave, but applying that lesson to the rest of my body was difficult. No amount of toughness will bully your ovaries into producing decent eggs. And when infertility treatments finally work and it comes time to give birth, you can’t force the baby to turn itself head down—particularly when no one notices he’s breech until you’re already dilated to ten centimeters.

  “I could smell the burning flesh when they cauterized the incision,” I said, and that seemed to be a crowd-pleaser.

  A year after my second child was born, I noti
ced a lump on my C-section scar. It was small, under the skin, and a little painful, making it difficult to wear anything tight on my waist.

  “It’s probably a hernia,” my OB-GYN said, and she sent me to a surgeon.

  “It’s definitely a hernia,” the surgeon said, and he cut me open.

  It was not a hernia.

  It was endometrial tissue that was growing in the scar, assumed to have escaped during the earlier procedures. “It’s not likely to come back,” he assured me.

  It came back.

  Fast-forward through several years, in which I struggled with unexplained spotting, ridiculously long periods, hot flashes, crazy mood swings, and stomach upset of various kinds. I had chronic urinary tract infections and back pain. I had an ovarian cyst or two, but they never burst, so no one seemed too worried. I took a variety of birth control pills and every dosage of antidepressant possible. I was tired, and my body hurt unpredictably—then, worse, constantly. I could barely get off the couch most days, much less parent those kids I wanted so badly.

  Sometimes I sought treatment, and sometimes I just tried to tough it out. When the doctors seem stymied, there’s not much else to do. Finally, once again, I ended up in the ER. Because I didn’t seem to be in extreme pain, it took them eight hours to see me and diagnose bladder spasms.

  A urology follow-up showed nothing.

  Meanwhile, a new lump was growing on the other end of my C-section scar, and this time my gynecologist said it was unrelated to my other issues and not worth investigating.

  When I finally insisted that maybe, just maybe, this was more endometrial tissue, and pointed out that my ovarian cysts had been endometriomas, her response was almost angry. “We can do laparoscopic surgery, but I can’t remove the lump that way. And if it doesn’t work, we’ll probably have to do [a drug I’m not naming, because I don’t like lawsuits], which puts you into premature menopause.”

  “That drug has horrible side effects,” I said, “and I’m a little young to go through menopause.”

  “Your other option is a hysterectomy.”

  I already knew that despite popular belief, a hysterectomy doesn’t cure or even treat endometriosis. So I got a new doctor.

  But my new doctor screwed stuff up too, so I got another.

  And another. And another.

  My oldest child was only four when my endometriosis symptoms started to show up in earnest. By the time he and his brother were old enough to retain real memories, I was already sidelined with chronic pain. When I was able to join them on hikes, it was a notable event, but always a short one. At some point I realized that my children had no idea I used to be tough. They’d never seen me as anything but Mommy, that woman that Daddy fetches things and cooks for.

  And after the botched surgery and bladder repair, things only got worse. Pelvic pain and muscle spasms were frequent, and I spent anywhere from thirty minutes to two hours in the bathroom daily. Travel, hiking, gardening—everything I enjoyed was difficult at best. On top of it all, there was an unrelenting mental fog that made reading and writing almost impossible. In the greatest of ironies, I had to give up hosting an interview series called Badass Ladies You Should Know.

  Friends and family tried to spin the situation, assuring me that just having survived the experience meant I was super tough. “OK, but did you die?” became our household catchphrase, putting any petty annoyances into perspective. But lying on the couch for months did not feel hard-core. Buying a used RV so I’d have easy access to a bathroom while camping was not exactly badass. And yes, discussing my bowel movements with perfect strangers, much less undergoing imaging tests for them, was pretty tough, but not in the way I’d always aspired to. The ultimate insult added to injury was that all these issues were thanks to my “lady parts.”

  I think childbearing is one of the most badass things a person can do, and even if I’d known this would be the result, I still would’ve gone through it to have my kids. But I didn’t know, and it’s not because I didn’t research or ask for help. I didn’t know endometriosis existed or that it might be related to C-sections. I didn’t know that the walls between various pelvic organs can weaken, letting them collapse into one another, and I didn’t know that fibroids and adenomyosis and Crohn’s disease and any number of other conditions can all overlap.

  I didn’t know that gynecologists get, on average, at least a year less surgical training than other specialists, and I didn’t know so many of them are woefully behind on the research for treating those diseases.

  I didn’t know how much doctors don’t know. And I didn’t know that the ultimate test of my toughness would be advocating for myself.

  I had to be the whiner. I had to make myself heard.

  “I don’t want you to become a professional patient.”

  My eighth surgery revealed issues the other doctors had missed: more spots of endometriosis, a pelvic prolapse that hadn’t been addressed, and surprise, the need for a hysterectomy, though not for the reason originally thought—it turned out that in addition to being halfway overrun with scar tissue, my uterus was also glued to my bladder.

  Finding this specialist had been a challenge. I’d joined a research group on Facebook, of all places, and learned an enormous amount about my condition, the issues that often accompany it, and the failure of the medical community to adjust treatment protocols. The group kept a list of specialists who had proven results, and the closest one to me was six hours away, in Dallas. He took my insurance, but then my insurance changed, and I had to find a new plan, which took months.

  But besides validating my symptoms and my pain, my new specialist also said one of the most helpful things I’ve ever heard from a medical professional. While he agreed with others in my life who thought I should be putting together a lawsuit, he understood why I was reluctant. “You definitely have some trauma from all of this,” he said. “And it’s OK to just take care of yourself. You can’t let your life revolve around being sick.”

  Not every chronic-illness patient has the luxury of decentering their illness, and I’m all too aware that even with expert treatment, endometriosis can come back. I’ll always have pain issues regardless, even with pelvic physical therapy, which has helped tremendously.

  But I’m taking his advice so far as I can. I’m glad to have some advice worth following.

  In retrospect, maybe I should have cried like a girl.

  It’s easy now to see all the places I screwed up. I should have known then what I know from research now. I should have left this doctor earlier and demanded this consult or that. I should have put my pride aside and demonstrated pain in a way doctors expected.

  Hindsight is twenty-twenty and whatnot. But it’s hard to see the forest for the trees when you’re being forced to find your own way.

  On the anniversary of my botched surgery, I celebrated my survival by hiking at Palo Duro with my best friend from high school, the woman who had climbed that final spring break stretch out of Havasu Falls by my side. It was a tough hike, and near the end, my husband took my picture as I flexed a not-so-muscular biceps, while my kids marveled, since they’d never seen me hike six miles before.

  It was also a tough drive home. My weak pelvic muscles made their objections to the challenge well known, wrapping my entire middle in ache while demanding I stop to pee every thirty minutes.

  I didn’t cry or vomit. I did admit I needed a heating pad and some low-octane painkillers. And when we got home, I let myself rest for a few days.

  I was proud of myself for making it that far.

  What is a pink tax?

  Have you ever been to the store to pick up something like deodorant and noticed that the prices for “women’s” deodorant and “men’s” deodorant differ? This is the pink tax, and it’s a form of sexism (and even classism!) that charges those who identify as women—and purchase products marketed to women—more mone
y for the same, or sometimes even a lesser, product as those marketed to men.

  In 2015, the New York City Department of Consumer Affairs found that 42 percent of the products they looked at included higher prices for the “women’s” version than the “men’s” and that this starts young. Baby products and items for young girls are priced higher than those for boys, and on average, when a woman purchases products like shampoo, razors, body wash, etc., she pays 13 percent more. Most of the time, the only difference between products is the color or shape of the bottle or packaging.

  A few cents’ difference might not seem like much, but not only does it add up, it can also impact self-esteem, particularly for those in lower socioeconomic classes. For those already struggling to make ends meet, spending extra cents to buy essentials might mean going without or feeling forced to skip what might be a small indulgence in a particular item that makes them feel good in their bodies.

  Many states in the US are fighting back against the pink tax, but you may still encounter it at the store where you purchase your essentials. If so, you can simply choose not to purchase the items with the higher price, as the components of the less-pricey “men’s” products are nearly—if not entirely—identical to the ones in the pink or sparkly packages.

  Sisterhood, Blood, and Boobs at the London Marathon 2015

  by Kiran/Madame Gandhi

  The marathon was everything. I trained for a year and then it happened. And truly it was one of the most profound experiences of my life. I ran with two of the most important women in my life, Ana and Meredith, and we didn’t leave each other’s side once, from start to finish. We crossed the finish line hand in hand. We raised $6,000 collectively for Breast Cancer Care. And we ran the whole way without stopping. London is one of the world’s best marathons because so many people come out for it—the sidelines are packed for the entire 26.2 miles and Londoners’ signs are hilarious. There are crazy people running without shoes or wearing tutus or carrying forty pounds on their back, and there are dance parties along the way. If I had to summarize my experience, though, the marathon was about family ;and feminism.