Going through an unexpected hysterectomy has been devastating – mentally, physically and maritally
by Margaret Tremont
Let that sink in. Given the common status of the hysterectomy, isn’t it time we break our silence and shed the stigma? As a result of our silence, our naiveté on this topic is deep. How many women even understand that the term “hysterectomy” actually represents three separate types of surgeries that fit under that heading?
Hysterectomy is a surgery that women have been undergoing for decades; my mother-in-law talks about the 1960’s where they were proactively scheduled as a matter of convenience to wealthy women.
According to the Centers for Disease Control and Prevention (CDC), from 2006-2010, 11.7 percent of women between the ages of 40-44 had a hysterectomy. By the age of 60, more than one-third of all women have had a hysterectomy. Yet despite the proliferation of hysterectomies, the experience can leave one feeling isolated. Having gone through an appendectomy and a hysterectomy, I can tell you not all bodily organs are created equal.
Our female organs are personal. They are central to describing who we are and shape the way we experience our lives. Despite the prevalence of this surgery, we seem to overlook that emotional impact. [And this article does not even touch on Eugenics and the unwilling victims of involuntary hysterectomy which certainly merits its own discussion].
The hard truth is we possess a proliferation of information available as we start to menstruate, but comparatively little available information for what to expect when it is about to end.
To put a fine point on it, in preparation for my hysterectomy I purchased a box of maxi pads thinking it would be similar to a post-childbirth situation. It may seem obvious to some, but I did not understand I would never bleed again following that surgery – and I am an educated adult that read everything I could find to be prepared.
I contend ignorance does not need to be part of the process; we need to bring this surgery -and its effects- out into the mainstream where it belongs. It is time we talk.
As you likely noted in the tone of the foreword, my experience of undergoing a hysterectomy has been equal parts emotionally brutal and educationally empowering.
As a corporate executive, my brain is trained to improve processes, and this process is ready for a big boost of emotional and physical transformation. As a starting point, our current medical practice puts the hysterectomy surgery before the what-to-do-next discussions; including important topics such as proactive side-effect treatments.
Like other areas of medicine, we wait for complications to appear before we act. But this Boolean approach leads to years of unnecessary suffering and delayed treatments. By educating ourselves, talking openly about what happens in detail, and sharing our stories, we can make the path more emotionally safe and physically comfortable. My purpose here is to share my personal story in that spirit.
I contend that a hysterectomy doesn’t happen in a mental or physical vacuum. It happens to the whole person along a continuum of our ongoing life-long relationship with our female organs, our womanhood, our intimate personal relationships, and our soul.
As for me, I have always had a love-hate relationship with my female organs– for every affordance, so many inadequacies. Over the years my female reproductive organs empowered me, and they left me powerless. They enlightened me, and they left me woefully ignorant. They delighted me, and they left me crushed.
These same precious female organs that are used to define our gender at birth, define the course of actions across our lifetime including how we see ourselves and how others respond to us. So, are you a woman if your internal woman parts do not produce children when you ask them to? Are you a woman if your internal female parts are removed? How do our internal female organs define our gender?
These are not just questions for society, they are questions on a woman’s journey through life.
My female organs have provided me with decades worth of struggles. Growing up in a single-parent Catholic household, detailed discussion about bodies and sexuality were taboo. I reached adulthood still not understanding the very basic workings of my female parts and suffered distressing consequences as a result. When I eventually married and wanted my female parts to work, they refused!
My infertility struggle lasted fifteen years, spanned two marriages, and countless cycles of failed fertility treatments.
And not ironically while was in combat with my uncooperative female organs, I was simultaneously battling rampant sexual harassment as a young female climbing the corporate (male-dominated) ladder of high tech – on the one hand I am in a constant state of discrimination at work for being a woman, and on the other hand, I cannot even get these women parts to do what they were made to do.
The betrayal handed to me by these female organs played out like a Shakespearean tragedy… the simultaneously emotional burdens of both sexual infertility and sexual discrimination.
Alas, all was not lost. To my delight, one month before my 47th birthday those female organs of mine actually achieved success and delivered our beautiful baby boy. But the love-fest with my reproductive organs did not last long. Following a family Spring break trip a few years later, I visited my OBGYN for an annual exam. During our “how are things going?” chat, I happened to mention that, while traveling, my period was starting and stopping.
I remember nonchalantly saying ‘This is normal for perimenopausal women, right?!’. And right then is where my life took a dramatic change. My very astute OBGYN, whom I credit with saving my life, replied “Sometimes yes. Sometimes no. Let’s take a look.” Within minutes I was down-the-hall getting an internal ultrasound. Having done rounds of IVF, I am very familiar with the ultrasound table. And, I had enough experience to understand what was happening when the technician began measuring something large on my left ovary, and then something on my right.
Back in the exam room I was freaking out and remember sending my little sister an uncharacteristically really harsh text that said “@ OB… they found something. Fuck Fuck Fuuuuuuck!!!” And, snap, just like that, my female parts and I were at war once again. At the tender age of 52 my ovaries had sprouted life-threatening tumors. Ten years earlier, my mother died of Ovarian cancer; my sole immediate focus became survival.
It is difficult not to digress into my Mom’s story here. Her life was as rewarding as it was challenging. But it was too brief. She worked hard; raised five kids on her own, and when she finally retired at age 67, she celebrated with a dream vacation to China.
I often summarize her demise as follows, “My Mom was hiking a mountain in Tibet on a Thursday, and the following Monday was diagnosed with Stage-IV Ovarian Cancer”.
By the time the disease was identified, it had spread throughout her peritoneum (a word every woman should be familiar with). My Mom passed away shortly after her 68th birthday. Ovarian cancer, “the silent killer.” I learned a great deal from her experience, but still not enough.
Fact: There are three types of hysterectomy surgeries: a partial, a total, and a radical. I challenge any woman to take out a pencil and paper and try to draw your internal female organs and identify which are lost in each type of hysterectomy.
Despite going through a hysterectomy myself four years ago, I myself could not draw that diagram until a few weeks ago. In the month between my diagnosis and my hysterectomy surgery, there were a number of women that wanted to tell me “Oh, yes, I’ve been through it too,” with a wave of their hand in the air as if swatting a fly.
Others minimized it by saying “Yeah. They make a few half inch cuts and take out your ovaries while you’re under. It’s outpatient.” Another said “they go up vaginally, remove everything, and you’re relaxing on your couch in less than five hours. Best thing I ever did.”
Here’s a fact: A hysterectomy can be done through the vagina, the abdomen or with laparoscopy. According to Scripps.org, in an “abdominal hysterectomy, also known as open surgery, the uterus is removed through a large abdominal incision. Sometimes this incision is along the hairline, similar to a C-section incision. Other times, it runs up and down on the abdomen. Drawbacks to this traditional technique include increased pain after surgery, greater risk of complications and longer recovery time.”
In my case, due to the hereditary threat of ovarian cancer combined with a pre-surgical MRI (revealing tumors with solid core and vascular structure), I required an abdominal hysterectomy. All hysterectomies are not created equal!
Additionally, ovarian cancer surgery itself complicates the hysterectomy. Like most surgeries the patient is unconscious during the surgery. Unlike most surgeries, the outcome is determined by the OB-Oncologist surgeon along with a personal representative to speak for the patient during surgery. The OB-Onc surgeon opens up the patient to physically examine the state of the reproductive organs with their eyes; using, in my case, the technique of abdominal surgery, she cut vertically from my navel to the top of my pelvic bone.
She prepared me mentally that she may also have to cut from my navel to my sternum, but thankfully, she was able to get access to the tumors without the second cut. A major concern during the surgery is rupturing a tumor; a rupture can send cancerous cells throughout the organs in and surrounding the peritoneum.
The OB-Onc surgeon gently performs the hysterectomy while physically lifting out tumors and connected body parts one-by-one, bit-by-bit. As the parts are removed they are actively analyzing them for the presence of cancerous cells. They take and test all surrounding tissue in progression until they get clear margins… ovaries, tubes, uterine lining, uterus, cervix, vagina, omentum. The surgery is considered complete when they get all the parts they need to get to clear margins.
My surgery took just shy of six hours. Throughout the surgery, my decision makers (in my case a team of my husband and my younger sister) were standing by to speak on my behalf.
The surgeon was in ongoing communication with them as the surgery progressed, deciding what stayed and what had to go, based on my/their risk tolerance which we tried to discuss beforehand. For those of you looking at the diagram here, mine was “radical hysterectomy'' performed abdominally.
With humor as my crutch, my ongoing joke is now there is but a plaque where the building once stood. But pushing the jokes aside for a moment, I found it too easy to feel alone and different after this surgery.
I had witnessed my mother go through this same ovarian cancer surgery, and I lived through the aftermath of her waking up to the news that she had terminal cancer.
I prayed hard on that surgery table, and when I awoke I celebrated the impact of hearing “There were cancerous cells, but we got it all out and you will be watched closely. You will go home in a few days and likely be fine.”
Once I ingested that sentence, I quickly asked “Which parts did I lose?” I felt sad, and a little bit angry, to hear my uterus and cervix got removed in the process; I was hoping to at least keep those. My sister explained to me that based on the doctor’s advice, she felt it was best and said to take it out. In their opinion, it was not worth risking another brush with ovarian cancer just to keep a uterus. In retrospect, I would have made the same decision for her.
Over the next five days I laid in the hospital. There was a lot of alone time. My steady and supportive husband visited daily, but he was busy trying to keep things feeling normal for our son at home.
My sisters visited here and there, but the days felt long. I rested, practiced gratitude, occasionally allowed myself to feel tinges of the sadness that was submerged beneath my appreciation for life, and I focused on getting home. I had one mantra. “I am one of the lucky ones.” At my disposal was a team of top-ranked doctors, a clean luxurious hospital, and health insurance. In my preparation I had discovered horror stories of third-world hysterectomies, and the images were plastered in my brain as I lay in an upscale hospital room staring at the blue waters of Lake Michigan. There was even a visit from a big grey therapy dog.
The staff was lovely, the drugs were doing their magic, and I was on the mend. Best of all, I had that amazing OBGYN who had taken the time to utter that life-altering phrase: “Sometimes yes. Sometimes no. Let’s take a look.” And there were my wonderful girlfriends helping my son get to and from school, and setting up playdates to keep him busy.
And that diagnosis: “It is gone and you are clear for now.” The contrast of my reality was bright compared to my mom’s journey of chemo, more surgeries, hopes, more sickness and weeks of unpleasant slow death. I swallowed any negativity and used this gratitude to propel me out of that bed and into walking laps around the (maternity) ward. LIFE was good.
The surgeon I chose was the Chief of OB Oncology with a great reputation and top education; she was lovely, specialized in this surgery and possessed a soft-spoken kind bedside manner. Her incision was long, vertical, and just a bit off center which was, I’m guessing, done to accommodate the much larger tumor on my left ovary. The once clean incision is now dented and a lump of scar tissue running down my middle; as I learned after-the-fact, I should have started physical therapy (PT) immediately after surgery.
In my case I rested in my bed at home for more than four weeks; the simplest tasks were crazy exhausting. The sadness increasingly surfaced. The nerve pain during healing was intense. I missed exercising, and could barely walk - my right foot dragged for several months from the surgical clamp having impaired my psoas muscle.
For eight weeks I had “fire skin” (as I called it) to the right of the incision where a nerve may have gotten cut. Spoiled by healthy living prior to the surgery, there was so much pain and exhaustion; it was as if they removed my engine. And while I remained grateful to have dodged the ovarian cancer bullet, part of me was deeply grieving. I cried at the memory of making love to my husband carefree.
I questioned what the loss of my female organs meant to my female identity and my marriage. Just when we’d finally made our peace, my female organs were torn from me. My precious parts, discarded as toxic human medical waste. Did the surgical team not understand my complex relationship with (what I thought of as) my gender-defining organs? The authority they held over my body, my spirit, my mind. With their removal, I no longer felt like myself. I felt altered.
The term I jokingly now gave myself to my friends was “other-womanly.” When a man faces prostate cancer, don’t they openly discuss the implications on his sex life?
I watched a Netflix show once where the man comically decided between saving his life or his sex life. I personally would have appreciated the same frank discussion, and, not that it would have changed my decision, but it would have felt more empowering.
I admit to feeling a bit robbed about that, and I am sorry that my anger permeates my words. I accept now that this anger is part of the emotional healing process.
Parts of my identity and parts of my marital-life were destroyed in that life-saving surgery – and, shockingly, there was no discussion of the emotional impact beforehand. How can they remove all those parts and fail to provide a heads-up? How do they not tell you that nerve-damage may result in pain replacing pleasure when it comes to intercourse? That you may feel lonely, and you cannot really talk about it because it’s too upsetting and delicate for others to process.
The internal physical therapy afterward will be agonizingly painful. Say good-bye to the fun days of sex as sport and romantic passion, and the explosive uterine quivers that provided such delight.
Someone should mention you may have to learn to fake it because you still have a wonderful spouse that wants to please you. Your intimate life, like your energy, will slowly slip away. You will not sleep. You will sweat embarrassingly. Your metabolism will slow. You will gain weight. In spite of the workouts, the sit-ups, the spin classes, your firm body will plump, ripple and dent across your abdomen.
About a year after the surgery my girlfriends and I got together and the conversation turned to our sexual journeys in our marriages. I had nothing to offer, and felt quite shocked that this would be raised while I was present.
So I sat in silence waiting for someone to ask me how it was now – you know – after “the surgery”. Did they honestly not know how bad it was? (In their defense, how could they when I just sat there?) I didn’t even open up to say “hello… they took all my lady parts and my deep delightful orgasm along with it!” When my husband retired two years back a friend asked me, so are you and your husband just having sex all day long now?
How do you look at your sweet friend and say, my sexual pleasure returns to me in my dreams while I am sleeping, but it’s like visiting a fictional town - when I wake, it is no longer there and I’m still here alone.
My experience with a hysterectomy has been an educational journey into women’s health. I see now that we need to be proactive in our discussions and our treatments. I advocate for the creation of hysterectomy clinics where all of these services are available in one place.
We need to cast aside the current practice that performs the surgery, waits for the patient to identify the symptom, requires a doctor appointment for discussion, and then takes months for the solutions to take effect. In my experience, we can do better. We could educate women on the variety of physical therapy treatments (pre and post-surgical), and I would celebrate the proliferation of support groups.
By getting out ahead of the side-effects we know about including: pelvic pain, pelvic floor, hot flashes, loss of sexual desire, sexual function, scarring, and weight gain, we arm ourselves with knowledge of treatments.
There is a need to treat the whole person with counseling, surgery, physical therapy, medication, education, support groups and whatever else we can come up with when we think collectively.
The discussion of the emotional and physical toll should preempt the surgery while there is time, and while ones’ head is not in a fog. Counseling and reiki are helpful and ought to be recommended before and after. We should encourage one and other to be more open and diminish any shame.
I would add more education up-front on the types of surgeries; have proactive discussions on the holistic medications available over the counter; host discussions on prescription medications and the benefits and risks of hormone replacement therapy (and the podcasts that offer insights here).
We can avoid smart women sitting at their computer coming up with nothing when they Google “What is a hysterectomy?” and “What to expect after a hysterectomy?” In the four years since my surgery there is now a great deal more information on the web, but we still have a long way to go to talking about it openly. The experience does not have to be this harsh, and my story is way too common. Women suffering in silence is a detriment to our society.