The Big H: Or, it’s okay to grieve the loss of your womb (even if you never wanted children)
It’s said that eclipses facilitate endings by illuminating what no longer serves us, providing an opportunity to close the door on something that we may not even realize needs to end. I know this about eclipses, because on a gorgeous fall morning in 2023 my horoscope told me so.
A solar eclipse was expected that afternoon, and I wanted to spend the day outside; but first I had to meet with a new gynecologist to discuss the results of a recent pelvic ultrasound, which included a mass on my left ovary. At the time, I wasn’t terribly worried, possibly due to the fact that I was vacillating between compassionate self-talk and avoiding reality altogether (I’m good at both). But that changed once I was in the exam room and heard my doctor say, I recommend a hysterectomy.
My immediate thought was Now THAT’s an ending, and then I debated whether or not to share my horoscope with her, because that would be fun and it’s really such a coincidence that Chani Nicholas told me to expect an ending and here we are talking about a really BIG ending due to something that was hidden and is now being brought to light—in other words, I dissociated and didn’t hear much of what the doctor said after ‘hysterectomy’. And then I started to worry.
On the drive home I cried a little, and said aloud to myself:
This is grief. It’s okay to grieve.
This is scary. It’s okay to be scared.
This is a big deal. Yes, this is a big fucking deal.
I was just shy of my 54th birthday and already three years into menopause, which some consider to be THE END, but not me; while it was the end of my reproductive years, menopause felt like a new start, because I was excited to no longer be sidelined by heavy periods and painful cramps. Plus, after several adjustments, my hormone replacement therapy was just right and I’d never felt better, at least not on this side of 40. But a hysterectomy? That’s something different: that felt like something was being taken from me, like losing part of myself—a part (or technically parts) that I’d taken for granted and even cursed at times, but suddenly meant more to me than ever before.
Growing up, I had a best friend who told me she’d rather have been born a boy, because being a woman in the world is too hard and men have it so much easier. She grew up to have two sons, and told me she was grateful not to have daughters. I never understood this, because I loved being a girl and I love being a woman, and while I agree this comes with challenges that boys and men will never have to face, I wouldn’t trade it for anything. So when confronted with the reality of losing the parts of me that had always represented my womanhood, I had to reconsider what truly makes me a woman, because the answer had to be more than my uterus, ovaries, cervix, and fallopian tubes, but I’d never been forced to think about it.
As a little girl I assumed I would have kids, but only for the same reason I assumed I’d get married: because I believed I was supposed to. I remember being about eight years old, and thinking I don’t know if I want to be a mother; that doubt remained through adolescence, and by my early 30s I was certain that I didn’t want children. Sometimes I wonder if I would’ve changed my mind had I experienced a functional relationship during those reproductive years—if I hadn’t spent so much time chasing unavailable men and struggling with my love addiction.
But when I look back, I don’t recall ever daydreaming about One day when I have kids or wanting to meet someone and start a family. My childhood fantasies included me and Officer Francis Poncherello of the California Highway Patrol, living in our professionally decorated Hollywood Hills home, with a dog and a cat…but no kids. I just didn’t have a burning desire to be a mother; so regardless of what might’ve happened had the “right” person come along, I’m glad I didn’t have a child just because I thought it was expected of me, because that burning desire is very important.
But even this reality has grief attached to it, because I felt that way, and made that decision, when I was able to have children; and even though I don’t regret it—I’m not sitting here at 55 years old feeling lonely and worried about dying alone (as our patriarchal culture threatens will happen if we don’t have children)—it is a decision tied to a ship that’s sailed. The option is gone. And I hadn’t even considered any of this before a hysterectomy was mentioned.
So yes, the proposal of a hysterectomy came with grief, but there was also relief. Just a few years before the illuminating ultrasound, my cousin died of ovarian cancer at only 54, and my grandmother, two great-aunts, and aunt also died of cancer. When I was 40 and my aunt was diagnosed, I recall thinking to myself Someday, in the future, when I’m older, I’ll probably/possibly/maybe want to have a hysterectomy —but this foreshadowing didn’t soften the blow of my current reality, because in addition to feeling stunned by the doctor’s recommendation, I was even more floored by the fact that Someday was already here.
“Someday” is a point in the future that serves as a handy marker for when you’ll eventually look at or do something that you don’t want to look at or do now. Someday is far away, and it’s a gift of youth (or at least being younger than you will be when Someday arrives). So when you reach that marker, it can force you to reckon with how quickly time has passed, and what you have or haven’t done with it.
To be clear, I didn’t have to have a hysterectomy—other options were provided, but my new doctor and two other physicians that I spoke with for second and third opinions all presented a few solid reasons for the procedure and why it would benefit me in the long run. One of those reasons was family history, and another was the amount of endometriosis found during my ultrasound.
You’ve been told before that you have endometriosis?, my doctor asked while reviewing the ultrasound images. This was a statement in the form of a question which translated to Surely you’ve been told that you have endometriosis, but I had not, and I was confused: I’m someone who consistently informed doctors for 30 years of my life (in other words, during my reproductive years) about debilitating cramps, fatigue and other symptoms, and was always dismissed like some sissy girl who just needed to suck it up. I was told:
Everyone cramps.
Go home and take some ibuprofen.
Try a heating pad.
Get on the pill.
Get off the pill.
Try the Nuvaring.
Stop using the Nuvaring.
Try this birth control pill.
Have more sex during your period.
Again: Go home and take some ibuprofen.
Never, not once, was endometriosis mentioned to me. The first time I heard the word endometriosis I was in my early 30s: a cousin my age was having a hysterectomy due to years of struggling with endometrial disease, and I later learned that other women in my family had hysterectomies for the same reason. Even so, it never dawned on me back then that maybe I could have endometriosis, or to ask my doctor about it, assumedly because I believed that surely a doctor would have informed me?
In her book, Ask Me About My Uterus, author Abby Normal shares her many years of living with endometriosis, including frustrating encounters with medical professionals, as well as her lengthy research on the topic. Normal states:
Although [experts] have pointed out that research regarding endometriosis has been happening for at least the past century, every medical textbook I’ve ever thumbed through seems to demarcate the condition as being relatively uninteresting: even in textbooks entirely devoted to reproductive endocrinology or gynecologic surgery, the passages on endometriosis are short….
She continues:
Even the textbook facts are not widely agreed upon. The doctor you see, his or her level of experience, and to some extent gender, will determine how endometriosis is explained to you. Some will tell you there’s no cure. Some will say there is a cure, but they can’t provide it. There are plenty of surgeons who could be staring right at endometrial lesions and would not recognize them.
It’s important to note that until 2013 I had only ever seen male doctors. I do not know my reason for this, and have no conscious awareness of purposely choosing male doctors. I wonder now if it was the inherited, yet very untrue, belief that men know “better” than women, that the patriarchal waters in which we swim blurred my ability to even notice that I’d never considered seeing a female OB-GYN, someone with actual lived experience as a woman. Or, possibly there were simply more male doctors on my insurance plans, which would point to an entirely different problem rooted in the same messaging. Regardless, I believe this contributed to my three decades of sucking it up, taking three ibuprofen every three hours, for three or four days every month, for decades.
I took so much ibuprofen that it damaged the lining of my esophagus. When an ENT told me to stop taking so much ibuprofen because it was destroying my insides, I literally cried in his office out of frustration and hopelessness:
The OBGYNs tell me to take ibuprofen, the ENT tells me to stop taking it. What am I supposed to do? His response? Try Tylenol.
So last fall, the grief wasn’t solely due to the pending loss of my womb (and the four other organs that would be removed during the surgery); I was also grieving decades worth of monthly suffering, and the days I lost because I could only focus on pushing through.
But what is endometriosis and how does it happen in the first place? Let’s begin with the symptoms, which include chronic fatigue, pelvic pain, debilitating cramps, painful intercourse, and infertility, plus IBS and UTIs. Regarding how it happens, Normal says:
We don’t know, with any degree of certainty, how or why endometriosis begins. We don’t know why some women get it and others do not. We don’t know why some women get it, suffer, and then appear to stop suffering at certain points in their lives. We don’t know why a woman with only a few scattered lesions might have debilitating symptoms and a woman who is chock-full of them might feel fine.
Dr. Elizabeth Coman, author of All In Her Head: The Truth And Lies Early Medicine Taught Us About Women’s Bodies And Why It Matters Today, refers to endometriosis as “one of the most crippling and least understood conditions affecting women’s reproductive health”. According to Coman:
Endometriosis occurs when tissue similar to the lining of the uterus grows outside of the uterus —on the ovaries and Fallopian tubes, or sometimes on the bowel, rectum, and the pelvic areas… The condition affects at least 10 percent of women in the United States, and takes, on average, more than seven years to diagnose. During those seven years, women suffer untold misery: from the symptoms themselves but also from the frustration of dealing with a medical system in which endometriosis is routinely overlooked, misdiagnosed or written off as imaginary.
So, initially I was confused when informed of my endometriosis, but then I was very angry, because someone should have told me about this years ago. But then I blamed myself, wondering how I could have missed this, because I should have known. And then I took it to another level: Is this all my fault? Even though intellectually I knew this wasn’t the case, it was as if a built-in shame switch had been flipped and I took on all the responsibility. I even caught myself wondering Is this because I didn’t have children? but then immediately followed with WTF, where did THAT even come from? Answer: cultural messaging.
In All In Her Head, Coman writes:
In the 1970s and 1980s, endometriosis was nicknamed ‘the career woman’s disease’ with the medical consensus being that it stemmed from the stresses of professional life; at this time, a woman diagnosed with endometriosis was less likely to receive medical treatment and more likely to be told that the problem would solve itself if she simply quit her job and stayed home. Meanwhile, childless women were often advised that getting pregnant would cure the condition, a bizarre myth that has proved remarkably persistent even today.
Indeed, the notion that women are biologically destined to be mothers still holds an unsettling sway over this area of reproductive medicine: a woman with endometriosis who presents at the doctor with fertility issues will receive a diagnosis twice as fast as those who seek help for painful periods. And while one of the more common treatments for endometriosis is hysterectomy, some young women who seek the procedure are refused by doctors: “You may want to have children someday” they’re told, as if they don’t know what a hysterectomy is.
Even now, the medical system operates from the same presupposition it always did: that a woman’s health, her happiness, and even her freedom from pain are all secondary to her biological destiny to become a mother.
So when we talk about the patriarchal waters in which we swim, and the messages we inherit about being a woman, this is what we’re talking about and an example of how it happens.
Again, I sought several opinions before making my final decision about the hysterectomy: in addition to consulting with medical doctors and my functional medicine practitioner, I talked to everyone I knew who’d had the surgery, I Googled the shit out of anything hysterectomy-related (note: avoid this topic on Reddit), and leaned heavily on HysterSisters online hysterectomy support.
I’m writing this because although I read numerous helpful stories on HysterSisters, very few of them were like mine: many of the women there were premenopausal and still in the midst of dealing with endometriosis and painful cramps, often while raising kids and/or having to hold down a job and unable to take time off; and some had been diagnosed with cancer, and a hysterectomy would be potentially lifesaving. I had so much empathy for all of them, and at times I felt guilty: because my painful periods were in the past, and my surgery wasn’t required though highly recommended.
I was on the fence for several days, but ultimately realized that no one’s opinion or story was going to help me make my decision. I had to remember all the times during the previous 15 years when I noncommittally, but knowingly, said to myself Someday I should have a hysterectomy, and that—like it or not—Someday was here. I believe that we have moments in life when our instincts speak loud and clear, and I had to listen, because mine had been talking to me about this for a while.
Once I decided to move forward with the hysterectomy, the grief and fear really kicked in. I was having major surgery, but felt like I had to whisper the word “hysterectomy”, as if we’re not supposed to talk about things like *this* (ie “lady parts” and their related procedures). But I talked about it anyway. And when I decided to tell people why I’d be unavailable or what I was going through, I don’t know if they were taken aback or just unfazed, because I didn’t get a lot of questions or feedback (which isn’t surprising since we don’t typically talk about hysterectomies, so how should one respond to such news?).
I had a great surgeon—a female—who didn’t initially present with the warmest personality when we met at her office prior to the hysterectomy; but at the hospital on the day of surgery, she was lit up and clearly in her element. She was attentive during pre-op and recovery; she spent time with my partner throughout the day of surgery, keeping him informed and clearly explaining the results and next steps; and she visited me early the next morning in my hospital room to go over all of that again. The growth on my ovary was determined to be a very large chocolate cyst, my uterus was the size of a football due to years of fibroids (another thing I was unaware of), there was “a lot of endometriosis”, plus other concerns that I won’t go into. A biopsy was conducted, the results were benign, and I was able to focus on my recovery.
18 months post-surgery, I feel great, I have no regrets, and believe I made the right decision for myself. I also learned a lot through this process—about women’s health and about myself—and realize that I have new, strong feelings about a few things. For example:
Please stop asking me if I have children. Please stop asking women in midlife if they have children. Please stop asking women if they have children. You never know what a woman’s story might be: maybe she had a child and lost it; maybe she has a child, but they have an estranged relationship; maybe she wanted children, but struggled with infertility; maybe she wanted children but didn’t realize it until later in her life; maybe she never wanted children. Whatever her story, it’s nobody’s business unless she starts the conversation.
I haven’t shared every detail here, and there’s a lot more I could say about this experience, about life with endometriosis, about a lot of things: I could share specific incidents with male doctors, like the one who noticed my tan lines and declared smoothly, Oh I see you wear the kind of bikini that I like (I was 18); I could talk about the cost of healthcare, and specifically the $75,000 that the hospital billed my insurance company for a two hour procedure (not including my surgeon’s fee, her assistant’s fee, anesthesia, or the cost of my overnight stay); and how all of this leads to rage and concern for all women, especially those without access to health coverage, or are unable to pay the potentially large out of pocket portion determined by a faceless insurance company.
I mentioned before that I’m writing about this for anyone who might be going through something similar, but also because I’m ready to talk about things that I’ve been taught not to talk about—things I was taught to whisper or keep to myself, because We’re not supposed to talk about stuff like that; the inherited belief that it’s “unladylike” to talk about our body parts, and that those parts should be given cutesy nicknames so as not to offend anyone.
I recently read a Substack that echos my frustrations:
Recently, Instagram fed me an ad featuring Halle Berry in a hot pink bandana talking about how she’d just launched her new “360 degree female longevity brand.” She then mentioned her diagnosis of perimenopause and “BLEEP atrophy.” Some entity, presumably Meta (whose CEO famously wants more “masculine energy”), bleeped out the word “vaginal.” … We are supposedly excited to lift the stigma on menopause, cheekily calling it “the Pause” and shouting out our “menoposses.” But we can’t even say “VAGINA” out loud on parts of the internet? ~ CHERYL WISCHHOVER, FAWNIA SOO HOO, AND WHATEVER NEVERMIND
THIS is what I’m talking about. Plus, there’s a lot of talk about menopause lately: there are menopause influencers, menopause coaches, numerous products being marketed to support women in menopause, and celebrities are involved, too. All of this is great—yes, let’s talk about it!—but is anyone talking about why we haven’t been talking about it all along? What good is it to talk more about something related to the female body and women’s health if there’s still a message attached that says we’re not allowed to talk about the female body, or that we can talk about certain parts but not others—that we still have to be careful with what we say and how we say it? It’s impossible to change the narrative around menopause and *all this stuff* unless we talk about WHY we’ve kept it to ourselves for so long in the first place: that’s patriarchy, and that’s a whole ‘nother blog post.
Please note: I use the term “Hysterectomy”, which technically refers to the surgical removal of the uterus; my surgery involved removing my uterus (aka ‘womb’), both ovaries, cervix, and fallopian tubes. My procedure’s full name is a total hysterectomy with bilateral salpingo-oophorectomy, or TAH-BSO. I found there to be a lot of confusing information online regarding the various types of hysterectomies (which only validates what I’ve discussed in this post); HysterSisters is a great resource for anyone faced with, or considering, surgery.
This post is intended for educational and informational purposes only, and should not be interpreted as medical advice or used in place of seeking consultation with a medical professional. Each person who has faced, or will face, a decision like mine will have their own reality, their own medical history, and their own very unique lived experience. Having a hysterectomy is also a very personal decision, and it’s important to resist putting one’s reality, values, or beliefs onto a woman who might be faced with this. Let’s stop judging and shaming one another when it comes to the choices we make around motherhood and what we choose to do with our bodies.