My Nightmare Decade With The Fibroid Fury Of An Ill-Behaved Uterus
The blob was my archenemy, a uterine fibroid tumor the size of a grapefruit.
“YOU FUCKER!” I yelled.
My very professional interventional radiologist flinched. She wasn’t used to this kind of outburst.
I usually reserve this anger for a person who’s wronged me, a car that’s cut me off in traffic, or a chair stupid enough to get in the way of my big toe. It wasn’t the first time I’d sworn at a computer monitor, but it was the first time I’d done it inside a doctor’s office. The blob on the screen deserved it.
I was in a non-descript room at UCLA Medical Center looking at an MRI image of my pelvis. The blob was a formless, white mass that took up most of the screen because it was pressing on every major organ in its wake. I finally understood my chronic pain, the anemia, and feeling like I was very full in a way that didn’t feel right. The blob was my decade-long archenemy, a uterine fibroid tumor the size of a grapefruit.
Nine Years Earlier
You know how you can see someone at Whole Foods, the post office, and the coffee shop again and again, but you don’t actually know them? You recognize them, but you exist in silence? You even make up a story about them, like, “That’s Joan. She works in accounting at a movie studio and has a cat.” One day you meet “Joan,” learn her real name, hear her voice, and suddenly it’s different. This person in your neighborhood becomes someone else, who they really are.
I had a similar introduction to my first fibroid.
Nine years ago, at age 32, I complained to my gynecologist about not feeling right. I was bleeding excessively, passing small bits of grey tissue, and feeling pregnant. I knew I wasn’t with child, but I did look like I had a bagel baby. During my annual gynecological exam, I voiced these concerns. My new doctor told me to have more sex and monitor the situation. I was too ashamed to tell her how bad it really was and that I just didn’t feel comfortable enough to have sex. I whispered it as she whisked me out the door.
Over the next two years, as the problems worsened, I kept super-size tampons with me at all times. While I knew something was there, I was still in the vague zone. It would be two more years before I’d be formally introduced to “Joan.”
Seven Years Ago
I moved to the west coast and got a new doctor. At my annual exam, I quietly shared that I bled a lot during my period for seven or more days. My doctor looked at me with earnest eyes and asked me some questions. She moved me to another room, told me to lie back, and put what looked like a white wand with a bulb into my vagina — I think I began to understood what all those people who claim to have been abducted by aliens are talking about.
During the ultrasound, I stared at the ceiling except for one quick glance at her face. She looked surprised. I felt nauseous and wondered if I had an immaculate conception. My doctor asked me to get dressed and meet her in her office.
As I sat on the edge of a stiff leather chair, she carefully explained to me that I had a big fibroid in my uterus. I knew what my uterus was, and I also understood the word big, but I had no clue what a fibroid was.
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“It’s a benign tumor. It grows in your uterus and can cause a lot of the symptoms that you’ve been experiencing. Yours is quite large and I’m surprised no one found it before today. It typically affects women closer to menopause, which you are a good 10 to 15 years away from. Anyway, you need to have surgery to remove it.”
I imagined an in-office procedure like a mole removal. My doctor quickly explained that it was a major surgery, almost the same as a C-section. She would cut through my abdominal wall, remove my uterus, cut the fibroid out of the uterine muscle, return my uterus, and sew me back together. A typical recovery is six weeks.
I felt like I was hit with a Mack truck. I remember shaking as I handed my ticket to the valet. When he brought the car around, he asked, “Miss, do you think you should be driving?”
“I don’t know,” I said. I called my mother.
The next six weeks were a blur as I prepped for surgery. My doctor put me on the birth control pill, which almost immediately caused me to bleed every day thanks to the excess estrogen in my system. I tried to be normal, to pretend it wasn’t happening. “It’s not cancer,” I’d say to myself. “It’s not such a big deal.” I didn’t want to make anyone uncomfortable. “Just be tough,” I thought.
One day, my fibroid decided to make its presence known at work. I was wearing a snug dress and high heels; I was pretending I was a fashionable lady who didn’t have a giant mass growing in her body. I stood up amidst an informal meeting and blood began pouring down my legs and onto the rims of my black and white, polka dot, Marc Jacobs heels. I stopped mid-sentence as I looked at my coworkers’ horrified faces and then down to the blood streaking my calves.
I excused myself to cry, clean myself up, and wonder how I was ever going to apologize. My male Creative Director, who I thought had to be the most offended, came to my desk, put his hand on mine and said, “Go home. Rest. And call that doctor and get the surgery moved up. You shouldn’t be suffering like this.” His compassion made me cry all the way home.
I tried to be normal, to pretend it wasn’t happening.
Still, the surgery couldn’t be moved, and my parents had already booked their flights to help me during the first week of recovery. I held steady, took naps in my car during lunch, and tried to prep my team as much as possible before going under the knife.
During this time, I learned more about fibroids. About 20–80% of women develop fibroids by the time they reach age 50. Some grow inside the uterine cavity where a baby would be, some are in the muscle of the uterus, and some grow outside. They can be asymptomatic or very symptomatic like mine, and hormones can be a factor in their growth.
I was told that mine may have manifested as a result of my feelings about motherhood and/or my mother, or that perhaps it was the result of unbirthed creativity or blocked energy. This all seemed too vague and saccharine to me, so instead, I imagined I had an alien baby, like the green lizard born on the ’80s TV show V, except mine was more like a coconut. His name was “Fib” — for fibroid and false child. He was male because I couldn’t imagine a female coconut named “Joan” causing me this much pain.
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In February 2009, I was wheeled into surgery. I’d been warned there was a chance they’d need to remove my uterus if they couldn’t successfully remove the fibroid. When I awoke, I mumbled, “Do I still have my uterus?”
The nurse said, “No baby girl, it’s gone.”
I felt the stunning heartbreak of realizing I’d never be pregnant with a real baby.
The nurse said, “Why do you look so sad? That sucker is gone. You should be celebrating!”
“But I can never have a baby.”
“Not your uterus, girl. That nasty old fibroid! It was 11.9 cm, like a five-month old fetus. It’s the biggest we’ve had in awhile.”
Relief washed over me just as she injected my IV with some pain medication.
I imagined I had an alien baby, like the green lizard born on the ’80s TV show ‘V.’
I was brought to my room where I was supposed to stay for three days. On the second day, I had a high fever. I couldn’t care less. Dilaudid was in my system, which Elizabeth Taylor accurately once called the Bentley of opiates. Apparently, I’d developed a severe infection. I was shot up with antibiotics.
Soon enough I turned a corner and they took away my special opiate button. Without Dilaudid, I could feel the pain throbbing in my abdomen. Sneezing hurt my stitches. Moving my thumb in a reflex opiate response hurt my stitches. When the nurse forced me to get up and walk down the hall, let’s just say I taught her some colorful combinations of curse words.
I went home and I lay in my bed. By week four, I could gently walk on the treadmill. My Pilates instructor visited me and brought me a “Rawkstar” smoothie. It had kale, mango, almond milk, and cinnamon. It was the healthiest thing I ever consumed and my first introduction to kale. I felt great after drinking it. I saw veggies in my future.
Six Years Ago
I made it my mission to “be healthy.” I read a book called Skinny Bitch, which talked about animal products adding hormones to your body. I knew more hormones could potentially birth fibroids, so I quickly went vegan. I read another book called Healing Fibroids: A Doctor’s Guide to a Natural Cure. I took vitamins mentioned in the book to keep my body strong and my hormones in check. I went to an acupuncturist known for healing fibroids and fertility issues. I was 100%-Tracey-Flick-Election-level on top of my fibroid game. I was never going to be plagued again.
Three Years Ago
As part of my annual gynecology appointment, I had to get an ultrasound. I withstood the probing because I knew it was part of the drill. “Probe away, suckers,” I’d think in my head. “My uterus is as clean as a whistle!” Until it wasn’t.
In 2013, my new doctor paused during the ultrasound and swung the wand toward my left side. She quickly informed me that I had a little fibroid, four to five centimeters.
“You’ve got to be fucking kidding me. How?! I’ve been doing everything right. I’m fucking vegan for Christ’s sake!”
She reassuringly told me we’d monitor it. I dreamed of bacon. I ate my first BLT in a year later that afternoon.
Two Years Ago
At my next annual appointment, my doctor thought she saw a polyp in addition to the fibroid.
“The good news is that the fibroid hasn’t grown. But the polyp needs to be removed. It would keep you from getting pregnant.”
I wasn’t dating anyone seriously at that point, but I wanted my uterus baby ready. I was 38 and time was of the essence.
I scheduled what’s basically a glorified abortion. My doctor scraped my uterus to get rid of the polyp and any other creatures my body had created. My uterus would be fresh and clean.
After surgery, I awoke to another nurse telling me everything went fine. My doctor popped her head through the curtain.
“I got the polyp and I also managed to get part of the fibroid. Hopefully it will disintegrate!”
Two days later, I was in her office in excruciating pain. I felt like I had a bladder infection. My uterus wasn’t happy. The whole area was in absolute misery. Why couldn’t my fucking uterus get with the program?
Three weeks and two appointments later, they told me I did indeed have a bladder infection. They never ran my initial urine specimen two days after my procedure; I suffered needlessly for weeks. But they did have a small consolation prize — they couldn’t see the fibroid on the last ultrasound. It was either very small now, or disintegrated. I was at peace with the bladder infection. It was all worth it, because now I was free.
One Year Ago
I found myself in excruciating pain again. I felt like I was being stabbed in my pelvis by a trove of little elves. Like with the bladder infection, I didn’t know where the pain was coming from. The pelvis is packed tight with the uterus, intestines, liver, and kidneys. I couldn’t eat and when I did, the pain worsened. I figured it had to be my digestive tract.
And of course my periods still made me want to die. I was passing blood clots the size of mice. I had shooting pains in my lower back and kidneys that required Ben-Gay and/or a heating pad. If I ran or jumped, whatever urine I had in my bladder pushed out into my underwear. I was definitely bedridden one day of the month, and sometimes three days. I needed to use a maxi-pad in conjunction with super tampons. The thing is, these changes happened gradually, like a descent into quicksand. Before I knew it, I was up to my neck in pain and abnormal living again.
During this time, I tried every healing modality under the sun. I went to Kundalini yoga, an energy healer, and a Reiki healer. I journaled and meditated. Finally, after pain forced me to curl into a ball with tears streaming down my face in a Kundalini yoga class, I headed to an emergency appointment with my primary care doctor.
Apparently, I had an inflamed colon; I was scheduled for a rushed appointment for a CAT scan. As my pelvis was radiated, I dipped my head back to see four dudes looking at the screen. It didn’t look good. As soon as I walked out, I went straight for the dude quad.
“What is it?”
“We haven’t done the report yet.”
“There are four of you. What’s the deal? Are my intestines going to fall out?” I asked, half-joking.
“You have an inflamed colon . . . did you also know you have a fibroid?”
“Still? I thought it disintegrated.”
The dude quad exchanged nervous glances.
“We need to look at it more closely, but it looks to be about nine centimeters. Go ahead and get dressed.” And dude quad was out.
My brain screamed, “son of a bitch!” Just when I thought it was over, I was getting sucked right back in. My doctor called and said, “It’s the fibroid. It’s big. You’re not going to be okay until it’s gone.”
Didn’t I know it. I had fibroid fury. Again.
In the six years since my last surgery, there had to be a new, less barbaric solution. I hit Google for alternatives. The top result was UCLA’s Fibroid Center, which specialized in a procedure called the Uterine Fibroid Embolization (UFE). I went to the website, called the number, and got an appointment for five weeks later. I needed an MRI, and then I’d meet with an interventional radiologist to discuss whether I was a candidate for the procedure.
In the interim, I still had pain. Luckily, Tylenol with codeine helped. But after a bad few days, I went to my Reiki healer. She placed crystals along my seven chakras and ran her hands over my body without touching me. I could hear lots of snapping fingers, especially over my pelvis. I had no idea what was happening, but my pain eased. I felt like I had space in my uterus. At the end of the session, she gave me a rundown of what she sensed.
“Your uterus’ spirit animal is a badger.”
I immediately thought about the honey badger. “As in, my uterus is like a toothy rodent?”
“No, it’s determined to get your voice out into this world,” she said while laughing.
“How about it be determined to get the fibroid out of my world? Also, that doesn’t sound penis-friendly.”
‘My uterus is like a toothy rodent?’
Shaking her head, she said, “I have a friend who’s a womb healer. She’s had success with fibroids. It could be worth a shot.”
Remembering the torture of my surgery and recovery, I figured one last natural, Hail Mary pass couldn’t hurt.
The womb healer specialized in abdominal mayan massage. She listened to my story and recommended an intense protocol: steaming my vagina with herbs, making my own estrogen-reducing tea, doing a moon bath, and learning how to listen to my uterus. I was desperate enough to take it all in stride, except for the last part.
“She is screaming for you to listen to her,” she said.
“Well, I’ve heard her. I’ve done a litany of things to help her. I’ve tried to address any and all potential reasons for this fucking fibroid. She is me and I am her. And she needs to STOP IT NOW OR MAKE IT CLEAR WHAT I NEED TO DO.”
I left with a list of herbs, a recommendation for a steaming pot, a geriatric stool, and smoke coming out of my ears.
A week later, I sat in my living room naked from my waist down while watching the Real Housewives of Somewhere. My puppy gave me sideye, as if to say, “What the hell are you up to now?”
Over the next five weeks, I followed the protocol. The MRI would be the moment of truth. If the fibroid was smaller than 9 cm, then I had a choice. I could ride it out the natural way or I could do surgery. If not, it would be surgery and a knuckle sandwich for the womb healer.
Dr. Simin Bahrami is astute, professional, and buttoned up. She’s an interventional radiologist at UCLA and prominent in the realm of fibroids. After telling her about my symptoms and what my life was like, she showed me the MRI screen. That’s when I yelled at the most accurate representation I’d ever seen of my uterus, pelvis, and fucking fibroid.
“As you can see, it’s amorphous. It’s big and it’s pushing on everything. All of the pain you’re having is because of this fibroid. I don’t mean to overstep my bounds, but your life is miserable and it doesn’t need to be.”
She was right. Suddenly, I stepped outside of myself and saw the way I’d been suffering. It wasn’t normal or necessary.
“How big is it?”
“That fucker,” I repeated, this time with an almost growl. Despite my fibroid protocol from the womb healer, my fibroid grew. All that vagina steaming for nothing.
“You are a candidate for a UFE. It’s much less invasive than your abdominal myomectomy. We make a small incision in an artery near your groin. We isolate the arteries that are feeding the fibroid. We then inject a solution to cut the blood supply to the fibroid. Without blood supply, the fibroid dies. And it will die this time.”
“What do you mean, ‘this time.’ Isn’t this a new fibroid?”
All that vagina steaming for nothing.
“I don’t think so. I can’t say for sure without seeing inside, but here is your scar from you prior surgery. The tissue is growing from there. I’m 90% certain it grew from tissue left behind in your previous surgery.”
Before I could scream another batch of colorful curse words, she said, “There is a chance that not all of the fibroid will die. But we’ve had great success. There is cramping and flu-like symptoms for a week after, and then you can return to life. Your symptoms should disappear immediately.”
“I want to scream, ‘sign me up,’ but I’ve been around the fibroid block long enough to know that there’s a catch,” I said.
“Do you definitely want to become a mother?” she asked.
The question. I’d always envisioned myself a mother. But I’d also felt like I’d been pregnant for a decade. I was incapable of physical intimacy at this point. The womb healer was never able to even massage my pelvis because I’d jump out of my skin. I was 40, single, and pregnant with a giant fibroid that was keeping me from having any kind of normal life.
Dr. Bahrami explained that this procedure could make it impossible to get pregnant. Women have gone on to have successful pregnancies, but it’s not guaranteed. For the best odds, I’d need to have another myomectomy, and there was no way my body could handle that again.
If there was meant to be a baby, there would be, but I had to get through this first and my body needed the easiest way to get there.
“I want the UFE. Let’s get me the next available surgery.”
Nine Months Ago
I lay on a table in a cold room under an X-ray machine as the anesthesiologist shot a sedative into my IV. I felt a warm wave of calm come over me as the interventional radiologist leaned over me and cut into my right groin artery. I watched the screens above my head and saw the fibroid. The radiologist injected the fibroid with a solution that killed the artery connection. I watched as part of my fibroid disappeared from the screen.
“Is it dead?” I asked.
The doctors realized I was watching and instructed the anesthesiologist to give me more sedative. More warmth, more calm. But I forced my eyes open. I had to watch. I had to see my archnemesis die. Soon enough, it was gone from the screen. While it still existed, it no longer had a blood supply. Blood is life and this fibroid was as good as dead.
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Within minutes, the cramps started and I couldn’t help but writhe around. The doctor asked me to stay still to avoid rupturing the suture on my artery. They promised me pain medicine. An eternity later — about 20 minutes — my old friend Dilaudid greeted me. It was good to be reunited.
In my room, I wrapped myself in healing crystals and let my thumb work its magic on the pain button. I could only get pain relief every 10 minutes, but I pressed it constantly.
In the middle of the night, the cramps subsided. The catheter came out. The instructions for meds came my way and I was on my way home. I had a regimen of six medicines (two antibiotics, two pain killers, and two anti-nausea medicines), all taken at different times. In my narcotic haze, I created a chart to let me know when to take what. It was nice to know my genes allowed me to remain high-functioning under heavy influences.
Eight Months Ago
The real challenges came as the dying fibroid released estrogen, emotions, and toxins. Without pain killers, I cried at the drop of a hat. With every tear, a hidden shame left my body. I wrote apology letters to people. I reexperienced painful breakups and situations. I made amends with a few people. It seemed there was an emotional component to the fibroid. And all of those bottled, suppressed feelings came out to be processed, relived, and healed.
I also had a burst of creativity. Words rushed out of me, a children’s book I’d abandoned two year earlier. Some of the ideas that were stuck were unraveling too.
As the flurry of creativity and emotional excavation slowed, my life got back to normal. I returned to working out. I finally gave up bread. My digestive tract normalized. I was able to fit into a jeans size I hadn’t worn in more than a decade. I was living again.
Three Months Ago
At the six-month post-surgery mark, I had my follow-up MRI. A good result would be 30% smaller. A great result would be 50% smaller. My fibroid was 60% smaller and completely dead. It will continue to shrink, but my fibroid nightmare is over.
The fibroid’s demise has been my rebirth and I almost feel like a different person. The darkness and anger that I always felt is gone. If the fibroid had been surgically removed, I wouldn’t have relived the emotional pain that screamed for release. I’m healed in more ways than one.
The other big change is my courage to stare my truth and shame directly in the eye. I’m no longer the girl too afraid to say how much I was suffering or who’ll minimize my pain. I still hate confrontation, but I’m working on it. If someone isn’t treating me fairly, I speak up. I say no to things I don’t want. The fibroid was like a black shadow that kept the darker feelings running the show. Now the light is shining through. I believe I deserve good things and they’re coming. I can feel it.