I am not sure it’s necessary, but it’s personal.
Sitting on crinkly paper in a hospital gown, my naked butt kept moving impatiently. Each move sent the noise from the paper echoing through the room. My feet dangled off the side of the exam table. It made me feel small, uneasy, unbalanced
I was small. A fully grown woman who stopped somewhere in the petite section. I never made it past the hemmed pants, and narrow shoulders. Never going to be a model like my mother.
The doctor came in and leaned against the sink. He was from Africa, tall and thin. He wore a bow tie with his formal white coat. I was being referred by my family doctor after complaining of changes to my menstrual cycle. Something felt off, different. Outside of bleeding between periods, it was a feeling.
My family doctor finally sent me to get an ultrasound. The radiologist saw two polyps. I was 43 years old, not old enough to be asked if I was still getting my period by the nurse who took my temperature. My grandmother had uterine cancer. My mother had breast cancer, twice.
I had already had surgery to remove a benign mass in my right breast. Currently wearing two metal clips inside my breasts to watch another set of, hopefully, benign masses.
The doctor wanted to examine me in the stirrups. Noticing my pristine, narrow cervix, he said, “You have c-section?” The nurse quickly whispered, “Children are adopted, no pregnancies.”
“Oops, sorry,” the doctor said so cavalierly. This appointment was hard enough, the waiting room was filled with pregnant women. A pregnant woman was having a stress test in the exam room next to mine.
I was still in the grief of infertility when being near pregnant women triggered emotional pain. Every part of an OBGYN visit seemed to circle around the topic. The alternative was the future, where my dried up body confused doctors, who cared to know so little about menopause. My presence expected just gratitude for being alive, serving no more purpose to womankind.
The doctor looked up, “Everything looks good, but the polyps need to come out. It’s a simple D&C, we just scrape the uterus lining and remove them.” Outpatient surgery. The doctor isn’t worried. Scheduled for a few weeks.
I sat up and took a deep breath. Wondering out loud I asked if he could just remove my uterus. I didn’t want to have my period anymore, and was struggling through monthly perimenopausal symptoms. I heard younger women could just erase their periods entirely through birth control. I was really jealous, taking out my phone to math out how many years I’ve had cramps.
The doctor seemed surprised, “No, that was very invasive. Polyps are usually benign.” He walked out the office. I was already in my 40’s, and confident I wanted it out. I had endometriosis, infertility, and chronic yeast infections. I struggled painfully for years.
I was told for decades there were no treatment options for endometriosis, but pain management and heating pads. I was really done with my uterus, and it was clearly done with me.
It was a volatile relationship, and both sides were fine going our separate ways. Days of throwing up on the first day of my period without an explanation, pain in 20-minute cycles that put me on the floor of my bathroom. I was just done.
A fair estimate was about 450 lifetime periods, 2,250 days of bleeding, and 1,350 days of cramps. It’s hard to imagine. I spent almost four years of my life experiencing cramps. I’ve used more than 10,000 tampons.
The morning of the D&C, my son woke up sick and my partner had to stay home to care for him. He has severe disabilities and mental illness and we didn’t have family to care for him. I went alone to the surgery. It was the worst feeling to be alone, but it wasn’t the first time. Our family doesn’t have a plan B, or an alternate.
Everything went smoothly, I went home in minimal pain. I recovered quickly.
I went to the follow-up appointment. I didn’t need to undress into the exposing hospital gown. Today, my doctor wore a bright red bow tie, and this felt ironic for his profession. He liked to lean against the sink in the exam room. He told me there were so many polyps on my uterus he lost count. Every inch of my uterus was covered in polyps.
The pathologist called it Morular Metaplasia, with mild atypical endometrial hyperplasia. A number of polyps had pre-cancerous features.
Honestly, I was sincerely surprised. A hypochondriac by nature, and chronic internet medical doctor, I always assumed I would be well prepared for pre-cancer. Knowingly nodding, yelling out, I knew it!
I didn’t know it.
I learned my uterus was heart-shaped. Yeah, my uterus was heart-shaped. For real, it’s just a big pillowy heart-shaped box. Instead of welcoming a fetus, though, it has adapted to the stress of estrogen dominance by changing its cellular structure to survive the harsh environment.
Now, I kind of think of my uterus like the barren wasteland of Mars. A desert oasis of inhospitable grievance. Nothing could live long there.
My heart-shaped box is important to the story. The treatment option was usually a progesterone -only IUD, but my heart-shaped uterus, and no history of a viable pregnancy, made implanting an IUD impossible.
I could go on birth control, or do nothing and play the cancer odds.
Can I just have my uterus taken out? I asked.
My doctor told me, “No, no, no, it’s too invasive.”
I wondered if the hysterectomy was inevitable anyway. Are we just kicking the can down the road?
The doctor told me, “Probably, maybe, but your husband hasn’t had a vasectomy. It’s too conclusive, invasive.”
I am seriously not sure why that mattered in that moment. I was 43, and of sound mind. I stopped using birth control when I was 31 years old, and I experienced zero pregnancies in the 12 years since. I think that’s pretty conclusive.
Plus, I didn’t want cancer. I really didn’t want my uterus, either. It’s a cute little heart, but don’t get overly nostalgic or sentimental, she’s been through enough. I felt it was humane to let her go.
I went home on the birth control, but the doctor prescribed one with estrogen and progesterone. I went overboard with estrogen and didn’t sleep for five days. A writer reminded me OBGYN’s are trained as surgeons, first, before understanding hormones and imbalances. I had to call and have it changed.
Severe estrogen overdose can cause insomnia, it’s a rare side effect.
When it was time for my six-month check up I had a new new doctor. It was by chance, but I was curious for a second opinion. He did an endometrial biopsy in the office. I seriously do not recommend it, I screamed in pain. It was really bad.
I talked to him about trying to break up with my uterus. This doctor was shorter, and he wore a regular tie under his sharp white doctor coat. His khakis were more like dockers, and his shoes were well worn. He looked at me with eyes suggesting OBGYN/Gynecology was not his first choice specialty.
He told me, “No, it’s too invasive.”
I told him about the continuing insomnia from the lower dose estrogen pill. He told me to stop taking it. He suggested a progesterone-only pill. I didn’t understand the point of birth control.
I was confused, and didn’t know what to do. I couldn’t explain, or didn’t feel comfortable explaining I didn’t understand why I needed to take birth control, or that I was uncomfortable taking it. It felt unnecessary.
It was a completely emotional reaction, but OBGYN’s aren’t really trained to understand the emotions of women experiencing infertility. They just move them along to specialists, if their patients can afford it. They tell women like us to drink more wine, and learn to relax.
I am ashamed to say I didn’t know, I hadn’t researched my own health problem or understood what was happening in my body. It was also my doctor’s responsibility to explain it to me. Neither happened. I left playing the cancer odds.
He didn’t explain why treating me with birth control would help the symptoms of endometrial hyperplasia from escalating. Why this specifically would keep me cancer-free. He just shrugged his shoulders, and I left the office playing the cancer odds. Still holding onto my heart-shaped box with it’s red sandy desert hollowness.
Wanting to have my uterus removed was also an emotional reaction. If it’s pre-cancerous, or I am at a higher risk for cancer, it should just be removed. I didn’t understand.
In 2018, I moved to a different state across the country. I picked a new doctor for my annual pap smear, this time a woman suggested by my primary doctor. I brought all these concerns forward to my new doctor. She didn’t have my records, so she couldn’t say. She was a younger woman, with long brown hair. She sat down at the little desk in the exam room, reading my chart.
When I asked her about my uterus, I was now 45 years old. I had started perimenopause. She immediately responded, she couldn’t agree to a hysterectomy without more information. “It’s a pretty invasive procedure, and I don’t know if it’s necessary right for you now.”
I breathed a sigh. Finally, a female doctor, but she couldn’t help me make the right decisions. She didn’t have my records, and I couldn’t really explain. She ordered an ultrasound, and my uterus only showed a few fibroids.
She mentioned my regular, like clockwork, periods throughout my life indicating all was essentially fine. She suggested birth control, but didn’t really explain how it would help me avoid cancer. My knee-jerk reaction to birth control, and the insomnia I experienced made me cringe.
I am also a queer woman with no experience taking birth control. Doctors were always treating me through the lens of cisgender norms. Even when clear about my identity, there was an obvious misunderstanding of shared experience.
Resentment, grief, was I trying to break up with my uterus for the wrong reasons? Did I just want my period to be over, was I really just afraid of cancer. Was that fear justified?
I blamed my uterus, her inability to be a real womb. It felt like a betrayal of my womanhood. Why have girl parts when they are just for show. I imagined my uterus withering away in this vast dark harsh environment. Dying off from decades with nothing to do but shed itself on time every 28 days. Didn’t my uterus deserve better?
Recently, I received an email telling me it was time to get another annual pap smear. Emotions resurfaced. This time, though, I was in an entirely different place. Hormonal changes, or just aging out of a phase. I wasn’t in an active stage of grief. I took a moment to research all the strange terms from my medical record, to understand what was happening inside my reproductive organs.
OBGYN’s are trained to help women give birth to their babies, they are trained to prescribe birth control, and to diagnose female cancers. There is a hole in their training. They don’t know how to treat patients who are not trying to become pregnant, but not yet through menopause. Between children and cancer, pregnancy and hysterectomy.
Between understanding the needs of all people within the lens of LGBTQ+
There is a lot a woman still needs, perimenopause is complicated, everything is changing. Menopause is still not well researched within the scientific community. Sexism against older women, and lack of money to be made through medications both contributing factors.
For now, I still have my uterus. I know eventually I will have to get my uterus removed. I am fine with it. I also know many other women who seek hysterectomies, and get push back from their doctors. The kind of treatment I received.
I am not defined as a woman because I have breasts, or a heart-shaped womb. I identify as a woman, because that’s what feels right to me. I could very well have been born a male, or without the organs commonly associated with womanhood. I would still be a woman.
Woman is a cultural construct.
It doesn’t make me any less a woman to be without a uterus. It would also alleviate a huge cancer risk that runs in my family. Yes, it’s invasive, but less invasive than chemotherapy. I am battle-scarred, and removing my uterus feels like the end of a long journey towards freedom.
It’s acknowledging the physical ways anxiety has torn apart my body. Higher than normal cortisol levels, estrogen dominance, infertility. They are all connected, and they forced changes to my uterus that over time could not allow implantation.
I didn’t see an OBGYN until I was 26 years old. Such a strange thing, but pretty indicative of the lack of conversations I had about my reproductive health growing up. Which was zero.
I clearly remember the look on my doctor’s face, at 26 years old, completely confused by the process. My experience may be different, my hesitation to discuss things with my doctor, and my lack of knowledge were unusual.
I am slowly learning. Grateful I got to wake up at all. I am ready to have an real, and open discussion with my doctor about the future of my uterus.
Joy Ellen Sauter is a freelance writer living in Seattle, Washington with her partner, Nathan, two teenage boys, and two cuddly pit bulls. She writes about parenting, mental health, popular culture, history, disability, the foster care system, and human rights. She is the Editor of TURNED UP, a publication about Cultural Theory. Joy’s work has appeared in Mamamia, Scary Mommy, and YourTango.