HysterSister
It has been five years since I chose to give up my ability to have children and have a total hysterectomy. On the morning of the surgery, I was taken to a room to undress, and I put on a hospital gown and fuzzy socks. I remember my nurse, a woman in her late fifties, asking if I had any questions. I was so nervous that I only shook my head. I must have looked distraught or terrified because she looked at me, chuckled, patted my shoulder, and said, “Don’t worry, honey. You’re going to be so happy you did this.”
I was twenty-seven the first time I knew something was really wrong. In my carpool ride on the way home from work, my vision suddenly blurred, and I doubled over in pain. My vanpool-mates were screaming in alarm as my body began dry-heaving and shaking. I couldn’t see straight. I thought for certain I was dying. They drove me to the emergency room, convinced I had appendicitis. I was assaulted with needles to place the IV lines that filled me with fluids and dyes as I was wheeled through every scan imaginable. I sat alone as the male doctors came into the room hours later, puzzled because everything appeared normal. “It could be you had an ovarian cyst rupture…” they said. “See your primary care doctor if you don’t feel better after a few days.”
Hearing the ovarian cyst possibility did not seem too far off. My periods had always been a source of pain and discomfort. They started at the age of ten. I was the first girl in fifth grade to begin them. By high school, I could bleed through an extra-strong tampon AND maxi-pad in an hour. I would lose blood so quickly that I had numerous instances of being sent home early for passing out in class. The silliest part was that I never felt comfortable admitting that there was a problem.
Starting from my first sex education class, the reaction was always a squeamish cry of “Ewwww” or “Gross” when the teachers brought up the female menstrual cycle. The boys were continually tuning out or plugging their ears during these talks. After all, it didn’t apply to them. My pediatrician was a male provider, who was nice and helpful, but barely touched on the topic during my annual physical. He offered nothing more than the simple question, “Has it started?” and “Do you have any questions?” There was never a moment that I felt comfortable or safe enough to disclose that I felt something was wrong with that part of my body. I did not enjoy lying to my male friends in high school when I would run out of the classroom, worried I would make a scene if I stained my uniform, or if they saw the blood draining from my face. I heard them call each other “pussies” in disdain and horror. How could I not assume a worse response even mentioning the menstrual cycle? When I got to college, I chose to get on the pill. My parents wouldn’t speak about it throughout high school, but I had heard from other classmates how it helped their periods. I thought that at the very least, it could help control the bleeding. I did not realize at the time that it kept the narrative in my head going that gynecological problems are a woman’s issue to handle alone.
The cycle of birth control pills did help regulate my period, but the bleeding seemed to get worse. I was losing enough blood that a tampon would be forced out of my body before I could get to a restroom. In between classes, I would pray that I had not stained my desk seat. Some of the time, I could barely sleep because of the cramping that would make my legs seize up through the night. Still, I kept on trying variations of pills, cups, pads, and tampons until it got to the point that I had so much hormone in me that I no longer had any periods at all. I only experienced insane bloating, unpredictable moods, and depression.
By my mid-twenties, I was angry and confused. I was tired of the trials, and failures, of different brands of hormones. Pills, patches, shots—I stopped all of them and decided I would just be miserable. After the episode in my vanpool, I sought out a new set of gynecological specialists. They suggested an exploratory laparoscopy to rule out endometriosis. I had never heard of that diagnosis. When I laid out my history of pain and blood loss, it seemed that it was the most likely result. Nothing was found—or I should say, “nothing of extreme irregularity was found,” according to the male doctor. Frustration wouldn’t even cover the emotions I had during this time. This was supposed to be the prime of my life. Instead, I found I felt invalidated and judged. Was this pain in my mind? Was I too weak? Too girly? Was I just imagining all of this? But pain is a communication tool for your body. It is how it alerts us that something is wrong.
In the two years that followed the exploratory laparoscopy, the pain and its effect on my life only got worse. My periods left my body bed-ridden on the heaviest days, and fearful of driving myself to work because I wasn’t confident that I wouldn’t pass out. My male boss was repeatedly reminding me that I overused my sick days, and it was unprofessional for me to sleep on the bathroom couch during my lunch breaks. I did not feel comfortable telling him that I was bleeding to death each month, losing half-dollar sized blood clots that increased my risk of a stroke. I sought a second and third opinion with other gynecologic specialists who ultimately gave me the same story—the only real way to stop what was happening was to stop my periods entirely. The only way to do that would be to consent to removing my uterus and Fallopian tubes, aka a total hysterectomy.
I was twenty-nine when I arrived at the final surgical gynecologist, stating I wanted the surgery. He was, yet again, a male provider, but he was the first to acknowledge that he believed my pain and frustration. His only misgiving was, “I may regret the decision later as I was single, unmarried, and young.” It pained me to say, he was not the only one who voiced that opinion. The honest answer, at that point, was I did not have the urge to have children. I remember wondering in my teenage years if I could survive childbirth. With so many years of shame and embarrassment about my body’s response to my periods, the question about potential infertility only came off as judgmental and damning. I felt stuck between a rock and a hard place. It seemed that I could only pick between either selfishly choosing a chance at my own ability to live a fulfilling life or the potential regret of giving up my reproductive organs too soon. It was isolating to try and figure out what I wanted without feeling at odds with my own male healthcare providers. How was I supposed to believe they could understand what I was trying to say? After so many years of disbelief, could I still trust my own body and mind to lead me to the right solution for myself?
Ultimately, I chose the surgery because I was tired of being sick and in pain. I was tired of feeling like life was happening without me. To this day, it is still one of my hardest choices. However, after all those years of not knowing, I finally had a real answer—adenomyosis. What that meant was my uterine lining had broken through the muscle wall of the uterus. It is a condition that has only recently come to the forefront of awareness in gynecology. Many consider it to be a cousin to endometriosis, but found in the uterine muscle. Estimates are that one in every ten women could have the condition, but no one can say for sure as there are no standard diagnostic criteria to determine adenomyosis until a woman gets a hysterectomy.
A few weeks after the surgery, my hands were shaking when I read my pathology report, which showed cyst after cyst, and growth after growth. My uterus was not a normal pear shape and instead was inflamed to the shape of a grapefruit. The uterine glands that had moved to the muscle walls were giving me the equivalent of birthing contractions during my menstrual cycle. I was going through labor every month since the age of ten, which totaled more than twenty years. I cried the entire car ride home reading that report. I cried as the doctor told me he would not have been surprised if I would have ended up a cancer patient or infertile had I kept my uterus. I cried because I was correct. I was vindicated—I was not crazy. My body was in pain because something was wrong, and it was telling me so! I was right to listen and follow through on this surgery.
There were moments I felt the other side of the coin and tears for the loss of my choice. There were moments it felt like I had been robbed. I would look in the mirror, knowing something I loved, owned, and was part of me was gone. During the time I was recovering, my peers were getting married and starting families. Numbness, isolation, and even envy swirled in my mind as I ground out congratulations for their pregnancies, engagements, and new families. If I had struggled with the shame of my weird body responses before, post-surgery exacerbated my isolation. I had to learn how to talk about my body in a way that I could feel proud and comfortable—especially with men. Journal entries and collages adorned my walls as I tried to navigate the sense of talking about my lack of a female reproductive system in a world that still has such a negative reaction to discussing female genitalia.
If I could see myself that morning five years ago, I would say, “You will find peace and acceptance in this decision.” Moving forward from this, I believe it starts with acknowledgment. We need to be aware of the assumptions and judgments our words carry when we discuss female body parts. Women make up half the population on this planet and yet the discussion of accurate sexual health education is still a tense and often toxic debate in the United States. Shame and embarrassment still follow most open discussions about female anatomy in classrooms and in the medical community. Research and scientific studies have a long history of being based on male subjects, even when it comes to women’s health issues. The menstrual equity movement is just starting to break into the news. This saddens me because of the simple realization of how far we need to go as a society to have these discussions about women’s health and what rights women should have to it. I made the best choice for myself with the information I had at the time. It had nothing to do with how womanly I am or my worth. It was a choice I was fortunate enough to be able to make for myself. While I did not choose this condition, I chose and continue to choose how I face it. For those future generations of women, their ability to get to this kind of diagnosis or care should not be a haphazard journey like mine. My voice should be part of the story that allows them to make that choice sooner, with better technology, more information, and most of all—no shame.
Contributor
Victory Witherkeigh is a new upcoming author originally from Los Angeles, CA. She is based in the Pacific Northwest and currently working on her first novel. Visit her website.