This is part of three part series exploring three key areas of loss I experienced during 2020, as I steadily approach the median+ of my existence.
I didn’t think I would grieve my uterus. Never thought I would miss the heart shaped organ that lovingly stretched and carried my children: my beautiful, sweet progeny. For all it has given me, it has also taken so many moments, stolen much of my youth, and caused me so much pain I had no idea what it was like to live without it.
We had a complicated relationship that began when I was 12 and got my first period. I remember taking generic classes in school about menstruation that liked to pretend that menstruation was something that shouldn’t really be discussed. ‘Special time’, ‘Your monthly bill’, ‘Aunt Flo’. Anything but the red river that flowed, weeping from my body, reminding me what the world perpetually saw as a ‘woman’s place’: to breed and continue what was begun long ago.
With that stream of crimson also came waves of excruciating pain. Spasms and contractions of that tiny organ that would wreak havoc on my body. By the time I was in high school, I regularly missed days of school each month. If I started bleeding in class, the crushing waves of discomfort would ebb and flow as it poured between my legs, and I would have to call my mother or grandparents to come rescue me. At the age of 16, I was taking high doses of Anaprox to get a semblance of relief and could do nothing more than lie in bed with a heating pad, reading, if I could focus through the pain. I remember finally telling the male pediatrician I saw and him asking me if I masturbated, and me wondering what the fuck that had to do with the monthly discomfort. My senior year of high school I missed 22 days. I was told that when I became sexually active it would abate. When that happened in college, it did, for a short time, then reared its head with a vengeance. Then I was told it would abate when I had children.
After the birth of my first babies via Cesarean it returned after a few years, now with even greater, excessive, blood loss. I became anemic, prescribed Mirena to regulate my body, and suffered the discomfort and agony of watching my hormones change my body and make me feel puffy and bloated all the time. As someone who has struggled with body image and weight issues since the age of 5, it was horrifying. I wasn’t staining my panties every month, lying in wait for the moment it would trickle into a gush, but it was a untenable trade-off. I lasted less than a year before I had to have it removed.
Following my third child, I decided the copper IUD seemed like a better choice, no hormones, but my bleeding became worse and worse, and I could feel it sitting in my uterus, like an unwelcome friend who would never leave. It had to go. I never wanted or trusted birth control pills and the weight gain/moodiness they were known for, and so I would just muddle through, knowing that a week a month I would be partially incapacitated, although I had learned how to cope and push through to function and appear ‘normal’.
My fourth child came and still the agony was a fixture in my life. Because I bled so much so fast the first few days of my period, including clots that would fall from my body like fruit from some cursed tree no one would ever touch, I could never wear tampons. Pads with absorbency weren’t my friend either, as the chemicals in the gel solutions would make my skin break out into rashy welts. I resorted to wearing cloth pads I could launder, although it made planning for outings a highly organized event: carrying a wet bag, and extra, bulky fabric. I couldn’t own small bags or purses to carry my things. Eventually, I just took a backpack everywhere.
I continued to live in this menstrual prison cycle, slowly watching it worsen. Four years ago, I found an OB who finally listened to all my symptoms and ordered an ultrasound. It appeared that I had areas of tissue in my uterine wall where it was heterogenous, or thickened in the lining in places where it shouldn’t be, and I finally got a diagnosis for what had likely been ailing me for 30 years: adenomyosis. Unlike endometriosis, which is more known, where the tissue lining of the uterus grows on the outside of the organ, adenomyosis occurs when the lining of the uterus grows inside the walls of the organ itself, causing heavy bleeding, incredible pain and a host of other issues, such as disruption of fertility and miscarriage. The fact that I had four children without issues with conception or maintaining my pregnancies is nothing short of a miracle.
He presented me with a few solutions: try an IUD again, get a uterine ablation, or hysterectomy. I agonized over this decision, unsure if I felt I was done with the option of creating new life, or if I wanted to preserve the option for the next few years. Favoring the least invasive, I opted to give Mirena one more go around. Once again, several months later, I felt my body’s hormones became disorganized and my body confused, even though the oceanic flow had come to a halt. I no longer felt like me, and I had it evicted.
With the removal returned the terrible bleeding. An endless deluge of blood monthly that left me weak, pale, shaking, and exhausting. My OB had moved away, and I found another one that was okay enough (it’s so hard to find one that isn’t just okay). I discussed an ablation with her, a procedure when the lining of the uterus is heated, burned, and scarred so that it can no longer release the lining, ceasing bleeding altogether. I was still unsure about it until a flight to Kentucky found me calling her office during a layover in Dallas because I was bleeding so rapidly and heavily that I thought I might die, running to the bathroom every 30 minutes to change my super absorbency pad. On the second leg of my journey, a crowded flight to Louisville, I walked straight to the back of the plane, pulling aside the airline attendant, Cat, and asking her if there was enough space, could I please lie in the back row to elevate my legs as my doctor suggested. In the secret language of women who understand these things, her eyes flashed with recognition and she held the space of that back row like my own personal bodyguard, funneling anyone who tried to sit by me into different rows. They were the only extra seats on the flight, and she made sure I had everything I needed. It was one of the greatest kindnesses anyone has every bestowed on me. When I finally landed an hour later and got to the hotel, one of my besties from grad school took me immediately to an urgent care, to make sure I wasn’t losing too much blood. We missed the opening night dinner, getting to say hello to all those we hadn’t hugged and loved for 6 months or more. The program coordinator was immensely understanding and kind, and with some dedicated rest in between residency events I finally felt human again three days later.
After that experience, I was ready for any kind of relief. I had the ablation a month later, and officially said goodbye to my childbearing years. My OB’s office messed up the scheduling and forgot to put my procedure on that date (for the second time), and when I arrived, I was already medicated. They delayed the procedure, which delayed the height of the medication, and when she finally placed the electric wand inside my uterus with rough hands, I could feel a tiny corner where she hadn’t anesthetized my tissue quite enough, and the burning session of feeling my flesh sear from on the inside took away any grogginess. I went home to rest, and then woke to prepare for an event for a business incubation program I was part of, where I couldn’t miss more than two events and had already missed one while at residency for school, because as a woman there is no allowance for such things. By the end I was exhausted, sore, and badly in need of pain medication, which I immensely dislike, and rest, which I found difficult in an opioid haze.
Although my bleeding magically disappeared, a crop of other symptoms slowly crept up in its wake in the months that followed. Instead of just monthly bloating and discomfort, my weight began to pile on, and no matter how healthy I ate, how much I swung a kettlebell, how much I rested, I couldn’t shed the pounds. I felt like my body was bursting with fluids all the time, my ankles swollen and my fingers sausage-like. My hormones began flying in every direction, like the Mirena but 10x worse: I was weepy, sad, angry, and much more anxious, sometimes all at once. I realized that I had begun to feel pregnant all the time even though it wasn’t a possibility. Without the shedding of its skin, my uterus seemed determined to hold on to whatever blood it collected, growing bit by bit by bit, becoming ‘boggy’. I went to a general practitioner that was more ‘holistic’ and had test after test taken, all of it appearing normal, although I felt nothing but. He put me on the whole 30 diet, mansplained the concept of nutrition, exercise, and calories, and I never returned.
I began researching weight gain and adenomyosis and discovered so many other women who suffered the same unexpected increase after the procedure, and the same frustration over not being able to get the body to relinquish its cushion. I also discovered that in other countries, ablation is no longer recommended because studies have shown it can make the condition worse, including worsening pain, fatigue, and overall ill health.
After asking some reliable care providers, I was able to get a solid referral for an OB in a town 30 minutes away. During our first meeting I told her I felt I needed a hysterectomy. Thankfully, she was open and willing to allow me to take charge of my body. She walked me through my options: partial or full, laparoscopic or invasive. She took some tests to see what the best approach would be. She felt I was a good candidate for laparoscopic surgery, and in late summer of 2020, when things began to open up from the pandemic and surgeries were reinstated, I finally had a partial hysterectomy, leaving behind my ovaries so I wouldn’t wake up in immediate menopause. I was in the hospital less than 48 hours, albeit alone due to COVID, with a view of the desert surrounding Espanola to comfort me.
The recovery was easier than I expected, less painful than my Cesarean or broken ankle repair years ago, but more than having my gall bladder removed. I could feel the stitching on the inside where my cervical neck was removed and sewed together. The bruises splayed across my abdomen appeared in huge purple blotches, prompting me to call and send my doctor photos, but it was just the internal bleeding from the procedure and eventually faded over the following months. I shuffled slowly at first, intentionally, eager to get back to my routine of daily walking. My daughter held my hand, and my son walked the dog. My torso could only move slowly to bend or twist, and it was months before I could exercise. But as that empty space healed, I discovered that I never knew how much torment my body underwent monthly. As I regained activities, I found for the first time that sex, which I had always loved, didn’t have to end in distress, persistent spasms and an ache in my uterus for hours that I always mistook as normal, now nothing more than a bad memory.
In the midst of finally getting the right doctor, I also found the right support in the form of Facebook groups, where so many women suffer daily with this condition. Daily, I see posts from women who beg their physicians for hysterectomies to end the torment, only to be told that they have to try X-Y-Z first and prolong the anguish, or they are too young and can’t have it because they MIGHT want children at some point, or they need to have their spouses agree to the procedure. It’s medieval, these practices of forcing women to live with an affliction that brings torture monthly, or even around the clock for some, particularly those plagued by more than one gynecological issue. It’s a subtle policing of women and their bodies, controlling fertility and childbirth, deciding for us when and how we can receive relief, while men can opt for vasectomies at any moment without any doctor blinking an eye. Women in these groups are longing to find something else, anything, because they can’t get what they want, asking with quiet desperation ‘has this medication or procedure worked?’ and ‘what are the side effects, do you get any relief?’. Time and time again I see posts and comments from women, such as myself, who have finally found the comfort and freedom we longed for only after having to bid our uteruses adieu. The only ‘cure’ for adenomyosis is hysterectomy.
Even though I feel healthier, and finally freed from the shackles of that troubled organ, I still feel a bittersweet pang of nostalgia that I will die without it. I feel sadness for all the moments I missed in life because of its chaos, and recognize that without it, I would not be a parent to four lovely humans. It has been my cross to bear, and the bearer of the fruit I love most in the world.
About a month ago, in one of my groups, I happened on a post from a woman, Antonesa (quillingart4you on Instagram), who creates art from paper that is rolled and shaped into designs, known as quilling. She posted photos of a uterus she created covered in blooming flowers, the ovaries budding, the entire piece wrapped in paper barbed wire, a perfect visual description of how the uterus flourishes with life, and how adenomyosis strangles it. I contacted her and commissioned a piece, selecting the flowers and colors, what represented me during this journey. I’m not sure that I have ever loved a piece of art more or saw myself reflected in something so raw and beautiful that I had to have it. When I opened the box and held it in my hand, I let the tears come in waves. For me, this was a watershed moment of remembrance and a recognition of healing. It represents all that I was and what I can now lay to rest, and it does so with beauty and spectacle, a loving tribute to a part of myself that I have surrendered physically, emotionally, and spiritually.
I didn’t think I would mourn a part of myself that brought so much suffering or miss its small presence in my belly. Occasionally phantom pains arrive, and I feel the same tug in my lower pelvis, like back labor, that I endured for most of my life. Or I feel a mysterious cramping where I know my second heart no longer lies. Like other women, I mourn the loss of something that contributed to my identity vis a vis what the world always told me was the hallmark of my feminine being. But now, despite that loss, I get to live beyond the confines of what my body always told me I could be, to get to do so much more than what I have grown to expect. Sometimes we don’t escape our lives whole, our bodies patchwork, bearing the scars of so many moments where it has betrayed our infallible belief that we will always exist as we were born, intact. Yet, in the mending and rendering of what we have yet to become, we get to experience a whole life, stitched with new opportunities and meaning, and we get to surpass what we always felt we had to just endure.
**April is Adenomyosis Awareness Month**
Learn more here: https://www.adenomyosisadviceassociation.org/
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