constellation scars
by Kristina Lilleberg
When I say I don’t drink anymore, I get that scrunched-up face from family, friends, or even strangers, as if they are one drink away from being me. It never fails that people will respond by detailing their drinking habits. You know I never drink any mixed drinks anymore or I only drink on the weekends. My practiced response is always the same: That’s great. You will turn out fine. We are one drink, one ultrasound away from becoming a dreaded title: sober cancer survivor.
The surgeons took my ovaries one at a time. Due to the holidays, they even each got their own removal years. The left ovary wrapped up in gauze for Christmas 2024. The right one ringing in the New Year with rounds of pathology. After the surgeries, I was left with a new beginning. A fresh start of a life cancer free in an old woman’s body completely free of hormones. This was the start and the end of me.
December to February, I spent my days and nights lying in my bedroom with five holes scissored into my stomach. Five incision lines the size of fingernails charted across my gas-filled stomach like a crooked constellation sketched across an over-inflated balloon.
Six months after my surgeries, at the pool with my sons Dolan, twelve, and Daniel, ten, I secretly scanned other women’s stomachs looking for constellation scars, hoping for an ally but never finding one. Maybe the others were hiding under full-piece suits and oversized cover ups.
Women on Reddit told me what pillow wedge to buy, how many months it might take to be able to button jeans over your incisions (four months for me), and how important it was to walk around and fart the weeks after surgery. They used words like vagina cuff, which I started to explain to my friends as my new cul-de-sac. See, I won’t have a uterus anymore so there’s no point going into town. The driveway is closed at the cuff. No reason to travel further up. Of course, I joked that Ryan, my husband of fourteen years, would worry that he was too big for the driveway leading to the cuff. All men want to believe they are too big for us.
Except maybe not Ryan. Honestly, he only ever worries about me. From the time I was twenty-nine and cramped without my period, Ryan worried. He grew anxious again when I miscarried at eight weeks and was told to insert progesterone vaginally if I wanted to stay pregnant. The progesterone, the pregnancy hormone, was supposed to thicken the uterine lining to help the embryo stay implanted. Unfortunately for me, I had a reunion weekend planned with my college roommates. Not only was I the sober, pregnant girl, but I also carried a package of progesterone inserts in a cooler while they crawled from bar to bar.
When I finally did stay pregnant, each labor for our two boys can only be described as scenes out of the worst horror movies. After three days of labor with my first son, the doctor said he had only one more try to use the vacuum, a manual suction torture device placed on the baby’s head to pull him through the birth canal. I asked my mom, who was a nurse and held my left leg up, what would happen if the baby didn’t come on the last try. They will cut you from the bottom up. And so I pushed him out, causing a third-degree tear from the opening of my vagina to my anus.
For the delivery of my second son, I got a new female OBGYN who promised after the delivery that she would sew me up to make my vagina as I requested: like high school. Thankfully, my second son came out much easier. The OBGYN sutured me like a perfectly wrapped gift, but after she left, I began to hemorrhage. I asked Ryan what was happening. Don’t look down, whatever you do, just don’t. The hallway scene from The Shining flooding from between my legs. One of the residents placed her fist inside my vagina. This is going to hurt. I have to punch through your sutures to stop the bleeding. I never looked down. I never got pregnant again.
Women’s bodies are pure magic. Our bodies are a far deeper mystery than anything you could find in the oceans. Each woman needs her own big bang theory. Doctors don’t even know which switch flips to trigger women to go into labor, and sometimes when our bodies fail, they don’t always know how to fix them. More than once, I’ve had to draw diagrams for my friends of all the parts that were coming out during my surgeries because my friends hadn’t known what was under their own hoods.
Ten years is the average time to get a diagnosis for endometriosis. I never heard of endometriosis until my twenties, even though one in ten women have it. After I got my first period at the age of nine, my mother made me a celebratory spaghetti dinner and told my three older brothers it was a special day for me. That day, I was proud to be a woman.
In the years that followed, my period went from a gift to a monthly nightmare of pain and bleeding. By the time I was a teenager, I had grown accustomed to wearing pads the size of pillows or changing tampons hourly. I started smoking and drinking young, unaware that I was numbing the pain while also trying every type of birth control that requires you not to smoke. In college, every three months, the campus clinic physician shot me with a syringe full of Depo-Provera, a progestin to prevent ovulation. I stopped taking the shot after my hair started to fall out and I lost twenty pounds. For two decades, not a single doctor mentioned endometriosis, not until the fall after I turned twenty-nine when the pain I felt during my period stayed constant like a knife I could never pull out.
After I turned thirty-one and married Ryan, I confessed to my OBGYN I was worried the pain meant I couldn’t get pregnant. My OBGYN was an older soft-spoken and a bit awkward man who delivered more than half of the babies in town. The local moms loved him because he never called a woman high risk regardless of age, and he liked the holistic approach to birthing, less meds and more pushing. I thought he could be the doctor for me for the long haul.
He said that I probably had endometriosis, which he explained was tissue similar to the tissue in the lining of your uterus but growing outside the uterus itself. I asked if he needed to do any testing or if there were any treatments. He said after all his years in practice he knew by the symptoms. If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck. He said getting pregnant would make the disease go away because your period stops so the misplaced tissue won’t bleed anymore. I wanted to believe in his holistic methods because I trusted my body. He ended our appointment by placing his hand uncomfortably high on my thigh while he looked down at the Chinese symbol tattooed on my ankle. Hope. Your tattoo means hope. Have some of that.
My tattoo was the result of drinking too much on spring break freshman year, but I tried to transform it into a symbol of faith—a reminder of my doctor’s words. I tried to ignore the facts I had researched, which were different from what he had told me. Thirty to fifty percent of women with endometriosis experience infertility. How could I get better if I couldn’t get my cure? I found hope after I got pregnant, but I lost faith again when I miscarried at eight weeks. The pain was so bad I went to the emergency room screaming that I had endometriosis. No one at the clinic had heard of it. Ryan was out of town for his uncle’s funeral, so I was staying in my parents’ guest bedroom. My mom, the nurse, took me to the emergency clinic because, while she had seen many women miscarry, she had never heard one scream out in so much pain. Mom held my hand while the nurse said they would get the ultrasound started. The nurse whispered in my ear. I am sure your baby is just fine. I told her to go fuck herself. Nothing could live through that much agony and gushing.
Months after my miscarriage, I was still painfully bleeding. I needed my cure, so I tried to get pregnant again. I followed the moms who had babies with endometriosis—the women on Instagram who crammed their blenders full of celery because of its anti-inflammatory properties. Endometriosis is considered a chronic inflammatory disease, so I gave up red meat and cheese, and drank celery juices every morning. Ironically, I drank more of the medicine I hoped would numb it all, even though alcohol was like pouring gasoline on inflamed tissue. On a rough night, my self-prescribed dosage included at least four whiskey shots, a crossover from beer to wine, and a swerve back to beer. Stress can make endometriosis worse, so I got acupuncture and hypnosis, and finally, I got pregnant. I didn’t get my promised cure. The pain in my left side only went away during my third trimester and came back during my labor. I got pregnant again. I got the new female OBGYN, the one who sewed me up tight before the hemorrhage. She didn’t have any cures for the return of the endometriosis pain, just promises that I could have more kids. Ryan didn’t want me to. He said no one can unsee The Shining.
For thirteen years while my kids grew, so did my list of specialists. I became an expert in a disease that had little expertise. There was the OBGYN at the special clinic in the west suburbs who said my ovary was fused to my uterus, so I needed a full hysterectomy. Then there was the specialist on the Northshore who said there was a five percent chance surgery would make the pain worse. None of my images showed endometriosis lesions. The one thing the doctors agreed on was that even with surgery to remove endometriosis it might grow back because microscopic lesions can be left behind during the surgery or there might be new growth because I still had ovaries making estrogen.
Since images never really show endometriosis, what if I never had it all? I put off the surgery. I had babies and cocktails to help with the pain that never went away in between periods. I gave up the cocktails because I threw up every time I drank, and the babies I raised became the children who watched me vomit.
When I realized I couldn’t escape the thing causing me pain, my own body, I decided to run with it, literally. At forty-two, I learned to run again after not having run since college. I found a body I didn’t know I had as the layers of inflammation melted off day by sober day, until sobriety won and I was strong as fuck, stronger than I had been even before. I started doing Deka competitions. Ten stations of strength challenges with weighted burpees and med ball sit-up throws. Just like I would binge drink, I hit the gym with vengeance. I once saw Steve-O from Jackass on Instagram saying that he believed alcoholism was the only disease that can actually make you healthier when you beat it. He was right. He was also the same guy who asked if I would be on Jackass mud wrestling with my college roommate in South Padre on Spring Break in the early 2000s. I guess we both have come a long way.
The pain came with me into my new sober life along with my new athletically shaped body. It always started in my lower right abdomen throbbing, right below my appendix scar, and stayed with me throughout the day and the night. It’s been this way since I was eleven years old when I vomited late into the night after being at Queensfest, a carnival put on by my cousin’s catholic school on the Southside of Chicago. After a day of candy and rides, I woke Aunt Di to tell her I thought my appendix had ruptured, but she blamed the candy. A week later, I had emergency appendectomy surgery. Three and half decades later, a scar the length of my middle finger stretches across my abdomen. Back in the 90’s, doctors didn’t dive into your belly button for surgery. They just cut straight across. I looked like I lost a knife fight.
One day in May 2024, I lay in bed with the usual pain and once again had to give up any plans of getting anything done to rest. With my hand over my right side, I could almost feel heat under my palm from the pain radiating below. Nothing burning for so long could cause anything but destruction. I was finally sober enough to hear what my body was trying to tell me. Something was really wrong, or worse, if something was really wrong, I would never know because I would always think it was endometriosis.
I made it to the computer to scroll Facebook only to find a post about Dr. Yang on Nancy’s Nook, a Facebook group for women looking for endometriosis research and practitioners that treat the disease. The women with the mysterious endometriosis disease figured out how to find one other. Women must do this. We must make groups with strangers in protected spaces using anonymous names to post debilitating medical symptoms. I wonder if men have to find secret groups to get help with common diseases. Nancy Peterson, the moderator of the Nook page, a retired registered nurse and endometriosis patient herself, posted about how even if you are functioning with the disease, you still need to be checked with imaging yearly. Functioning. A disease doesn’t go away just because you learn how to run with it. The first doctor she recommended in Chicago was Dr. Yang.
By July, I sat in Dr. Yang’s Northwestern office while she reviewed the results of my pelvic MRI. I had already read the lines online in my chart. A left ovarian cyst consistent with a small endometrioma was noted. Also, there are subtle changes of the uterus which may correlate with adenomyosis.
This wasn’t my first review of a pelvic MRI. Over the decades, I’ve had a handful of ultrasounds and MRIs. None of them showed anything which isn’t unusual. Like I said earlier, even the most advanced imaging can’t detect it. Endometriosis can only be diagnosed by having laparoscope surgery and biopsy. The surgeon makes a small incision near your belly button and inserts a camera down into your abdominal cavity and pelvic organs. For decades, doctors told me I had this disease. If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck.
More surprising than the results was Dr. Yang, a woman about my age in scrubs, who encouraged me to get a hysterectomy. She explained, as she placed her hand inside my vagina to see if she could feel anything, that adenomyosis could have caused the hemorrhaging with my second son. The scene from The Shining had taken place in the building next door to where Dr. Yang moved her hand further up and pressed her fingers into my right ovary. Adenomyosis is different from endometriosis mainly because of where the disease grows. When you have adenomyosis, the disease is confined to the uterus. When you have endometriosis, the disease is outside the uterus and more difficult to remove and control. If you have adenomyosis and you remove my uterus, you remove my problem. Adenomyosis is what endometriosis has never been. Curable.
No one ever gave me this diagnosis before. Dr. Yang’s face crinkled when I winced as she pressed to the right side beneath my appendix scar. I am not sure why the right-side hurts so much, but if you are in pain, we should do the surgery and see what you are dealing with.
I started crying on the table in my gown surrounded by open flower paintings probably from Home Goods. OBGYN rooms are full of framed flowers. This is how we are supposed to think of our vaginas. Soft lovely vulva petals unfolding birth and fertility. What woman is coming into an OBGYN feeling like her vagina is a bouquet? Mine always felt like only the thorns without the roses. Dr. Yang gave me a hug, one that didn’t feel at all awkward. I wondered how many women she hugged that day? I asked her what we both were thinking. I have to do this while I can, don’t I? She nodded. It was only six months until Inauguration Day 2025. Everyone with flowers was afraid.
From July to December, I ran as many races as I could get medals for. I ran a 5k in under twenty-three minutes. I coached my son Daniel’s running team, training him to run his own 5k. I tried to cancel my surgery five or six times, telling myself like we all do that the pain wasn’t that bad. Four days before my surgery, I pushed and pulled a sled loaded with weights across a gym full of men while I screamed. My pussy is on fire. After finishing the competition, while I puked in the bathroom, my coach defended me to the men. She is having a hysterectomy this week. Let her have this moment.
Whenever I am afraid to do something, I get hypnotized. I know what you are thinking. Most people think hypnosis is all parlor tricks and fake magic. The secret is that it is real, like it works for me. When I was twenty-nine, I smoked a pack of Camel Lights daily. At a bar in Wicker Park with my cousin and her friend Gina, I rambled on my broken tape narrative about needing to quit smoking. I know a guy, my professor, he can hypnotize you to quit smoking, I swear. Later that morning, when I woke up at 3 am to have a smoke, I decided I would try anything. I took the Red Line to Evanston, knocked on the door of a giant old brownstone near the shoreline. A very tall and thick Polish man opened the door. I was expecting someone different, someone smaller holding a swaying watch. Instead, I got Tony.
He looked like he could hold his own in a fight club while wearing his light blue colored scrubs. He handed me a cup of tea in a disposable paper cup while holding the door open. With his thick forearm, he showed me into a room with a massage table. I was hesitant to drink the tea, worrying maybe he was going to poison me. I was a woman living alone in the city. We survive by thinking everything could be roofied by anyone at any time. My gut made me stay. Instead of running out the door, I drank the tea, not just that day but again and again. I drank tea before Tony hypnotized me for panic attacks, for fear of flying, for fear of not getting pregnant (three weeks after each hypnosis session I would get pregnant with each of my sons) and most recently for surgeries.
There is a lot you must do the night before a hysterectomy. First, you have to do a colon cleanse, and since I was only forty-five, I never had a colonoscopy. Liquids only for the entire day before. Around six at night, you start the cleansing. For some reason, I decided I would be a good mom and not let abdominal surgery ruin the Christmas holiday. In between running to the bathroom we hung ornaments, me, the boys, Ryan, my mom, and my pre-surgery checklist. After my second mandatory shower with orange-colored antiseptic shampoo, I finally lay down with wet hair for my Tony session. He counted me down and took me through each step of the surgery until I woke up ready.
The next day, a resident anesthesiologist injected whatever potion goes into the IV that allows a person to willingly be cut into by another person. As the residents moved me onto the surgical table, I noticed what looked like a stereo in the corner. I asked if they could play music, and they said yes, whatever I wanted they would play. I asked for “Move Bitch” by Ludacris. The last song my full body ever heard was the first song I played for every race I ran. I didn’t know the real race was just beginning.
When your uterus is removed from your body, the surgical table is tilted so they can pull the organ out easier. At my two-week post-surgical appointment, Dr. Yang told me that when she pulled out my uterus, she had to wait to see if my ovaries would work on their own after being disconnected from the uterus. I imagined my uterus as the engine. Each ovary as a piston. My right ovary had imploded and was not able to work on its own. Dr Yang had told me never saw anything quite like it. The pain might have been from the ovary or the adenomyosis. Most likely it began decades ago on that night at Queensfest when I was just eleven. The knife-fight cut caused scar tissue that grew with me from childhood into middle age, stretching from my incision to my rib cage. No evidence of endometriosis, but the pathology wasn’t back yet. I asked why it was taking so long. It isn’t cancer or anything, right? Dr. Yang said she didn’t see any evidence of cancer.
The day before Christmas Eve, Dr. Yang’s voice changed tune when she called. I have never made this call before. This is my first time. But there was a rare form of cancer found in your right Fallopian tube. It’s called STIC. We accidentally found it. Accidentally. Like a shoe left in the middle of the hallway you almost trip over.
Hours later, I read in My chart: Fallopian tube #2 with serous tubal intraepithelial carcinoma (STIC). It only took one phone call to give me cancer. I called my best friend from high school, Sheetal, a colon oncologist at Northwestern, and gave her permission to look in my chart. Holy shit. I think your hysterectomy just saved your life.
Six years. That is how long Dr. Barber, the Northwestern oncologist, said I probably had before the ovarian cancer would have spread. Curable is what I am telling you now. In six years, I will be treating you, not curing you. And what was Dr. Barber’s cure? What is the cure for most of any women’s health issues? Cut it all out.
Six weeks after my first surgery, Dr. Barber went back into my first four hysterectomy holes on a seek-and-destroy cancer mission. She made a fifth hole, a fresh new incision, and took out my last remaining ovary. She washed and biopsied seven masses. Seven days after the second surgery, Dr. Barber called to say there was no evidence of cancer spreading. She seemed both excited and surprised.
From the moment I woke up from the second surgery, everything was different. The air was different. Too hot and too cold all at once. My body ached and felt aged in a foreign way, like my skin wasn’t my own. When I spoke, I didn’t recognize my own voice. I sounded angry, always angry. My emotions were angry or crying. Ryan felt it, too. The moment I saw you after the cancer surgery you weren’t the same. Even your face looked different.
Months later, I look in the mirror. Who am I now?
I am a woman without any womanly parts. A mother without the first place I carried my children. I am a woman who spreads estrogen gel on my forearm every morning because, one time, when I put it on my legs it blew out my knees, stopping me from marathon training for weeks. You can’t touch anyone or anything while the gel dries, especially not your dog or your kids. The testosterone dries quicker, but you have to put in an empty syringe, so you get just a pea-sized drop on your finger. Too much testosterone can lead to an overdose. I am a woman who needs progesterone and magnesium to sleep at night. I am a woman who had to find a new menopause specialist when the first specialist wept on the phone because she didn’t know how to help me.
The second specialist is barely an improvement. When a lab error led to elevated estrogen levels, a nurse at her office called to say I needed an ultrasound. An ultrasound of what? I asked her, and she responded with great urgency. Your uterus. You could have uterine cancer with levels that high. If she had only checked my chart, she would have been spared my reply. You can call Northwestern and ask them to look in the trash—because that is where my uterus is.
I’m still searching for a new specialist: one whose nurse doesn’t ask when the last day of my period was, or one who doesn’t make grim goals. I can get you feeling seventy percent back to yourself but never a hundred percent. You will never feel a hundred percent again.
I am a woman with health insurance who knows how to fight and claw my way through recovery, and still I sat in my pajamas in the middle of the night screaming behind the windshield of my car. Why was I saved just to feel like this? What about all the others with less than me? Will they ever be able to stop screaming? I can see them all. The women with constellation scars alone in the darkness.
Six months after cancer surgery, Ryan and I sit in Dr. Barber’s exam room. I am not sure what she is going to examine. There aren’t any parts left under my hood. On the wall, next to Ryan’s head, is a framed picture of a purple flower with large water droplets gathering on the petals. I ask Ryan why they put flowers all over the walls. He looks at the picture. It’s a picture of what all you women are supposed to strive for.
I look down on my stomach. The constellation of scars staring back at me. I have lost all my petals. I am all thorns.
About the author:
Kristina Lilleberg is a graduate of the Minnesota State Mankato MFA program who has spent the last nineteen years as a dedicated designer of online education for both higher education and the healthcare industry. When she’s not applying her expertise to learning strategy, she can be found balancing her time as a wife and mother to two pre-teen sons with intense physical training for her first marathon and a Hyrox competition. She is currently focused on using her second chance at life to add much more to her bio.