Losing the First Ovary
When I was 25, I woke up with an acute pain radiating from my abdomen that was relentless enough for me to wake my mother in the dead of night to rush me to the ER. I thought it was, most likely, appendicitis, so did the emergency room staff, until they saw the ultrasound. I had a solid mass the size of a grapefruit twisted around my left ovary. The sense of urgency became apparent, as the hospital’s top OBGYN surgeon hurried through the night to remove the mass before it ruptured its contents into my belly. The word “Cancer” fluttered in the air, but before I could count to three, the anesthesia kicked in. When I came to, hours later, I was stitched together with six-inch battle wound akin to a C-Section and I had lost my left ovary.
At least I had one working ovary, I thought. I recalled the episode of “Sex and the City” where Miranda, the “smart one”, is informed by her gynecologist that one of her ovaries is lazy and thus becomes concerned that she can no longer be so choosy about men if she’s intent on motherhood. In subsequent episodes, she discovers she is, in fact, pregnant in spite of her bum ovary. But that was the extent of my knowledge of problematic ovaries at the time. It all worked out for Miranda, a woman pushing forty, so naturally I thought it would for me as well.
I hobbled to the hospital bathroom like I was carrying a watermelon between my legs, cracked a joke to the nurse to divert from the seriousness of the situation, my usual coping device. But it hurt to laugh. I slurped back a couple mouthfuls of Jell-O, pressed the button on my morphine drip, and I went back to sleep.
A day later, the pathology returned, revealing that my mass was a Borderline Ovarian Tumor, which is a low malignancy potential ovarian cancer. It’s estimated that 15 out of 100 ovarian tumors are borderline ovarian tumors. Despite this sizable number there is very little research being done on this form of cancer that impacts women between 20-40, their most fertile years. There is a 50% rate of bilateral recurrence, meaning they tend to grow on not one but both ovaries, and the only treatment for it that currently exists is surgery. In short, I was 25 with ovarian cancer having to swallow the bitter pill that I would most likely lose both my ovaries, and thus my fertility, by the age of 30. I was gutted.
I cried for a month following my diagnosis and the possibility of never having children. While it still seemed years away at 25, being a Mother had always been my biggest dream. I envisioned a home filled with children’s laughter, toys and art supplies strewn about in joyful disarray, and myself at the center of it. I never imagined something might happen to render that vision of my future life an impossibility.
The Race to Preserve Fertility
I was quickly referred to a top fertility specialist in NYC to freeze my eggs even though I wasn’t married or planning a family. Over the next four years, I underwent 5 rounds of IVF to freeze eggs and 6 surgeries to remove recurring borderline ovarian tumors. The body that I’d always loved and derived pleasure from became foreign to me, an enemy, an other, a two faced traitor. I dreaded each ultra sound appointment, as the flickering black and white monitor of my uterus inevitably exposed new borderline ovarian tumors growing aggressively.
After these appointments I would ceremoniously lock myself in my room and ugly cry my grief out in private, ultimately picking myself up and pressing onward. I became so stoical simply to get through all my procedures, that often my friends and family didn’t realize how much I was actually going through. If I let myself share, even for a second, all the turbulent emotions that lay just below the surface, I feared I would break into a thousand and one pieces and never be able to put myself back together again, like Humpty Dumpty.
Losing the Other Ovary: Surgical Menopause
By my late 20’s my oncologist told me my remaining ovary had to come out. He spent all of five minutes explaining I would have to wear a hormone patch, as my body would be thrown into early menopause but other than that I would feel largely the same. That was it. I would be a 30-years-old, in Menopause. My shame and despair was so big it could fill a room. I couldn’t even utter the word “Menopause” to my friends and my partner because it made me uncomfortable, and it just seemed wrong. I was young. I was supposed to be in the throes of what everyone had always said would be the best years of my life. I shouldn’t be going into menopause. But, little did I know, that was just the tip of the ice burg…
When I was fresh out of surgery, my mother and me scoured the Internet for information about Surgical Menopause but nearly every resource available was geared toward women in natural menopause. The articles and firsthand accounts of women, particularly young women, in surgical menopause were non-existent. I felt completely alone because no one was talking about this medical condition, at least not publicly.
Swapping Ovarian Cancer for Chronic Health Condition
I am now well into my third year of surgical menopause and happy to report I have had no recurrence of borderline ovarian tumors. I have swapped ovarian cancer for a chronic health condition, which in the medical community’s estimation is a success story. I am by most accounts young with a condition attributed to the old, the aging. I am weary from the side effects of the surgery and the medications, working through the physical and emotional exhaustion of carrying a chronic health condition, but I dig deep and persevere.
I don’t like pity; my mother raised me to be solution oriented. I don’t broadcast my daily struggles on social media, or to my friends and family unless prompted. I don’t like to complain or wear my weakness to the world like a warrior; few people know I am sick. Those who are privy to this knowledge often question how I can post such happy photos on my social media accounts. Sometimes, I do, I feel like a faker living some sort of double life. It isn’t being knowingly deceptive; I just choose to share my “good days”, my wins. It makes me feel normal, at least outwardly. Which, when you feel lousy a good portion of the time as I now do, those healthy snapshots are what you aspire to, not the days when you can’t get out of bed.
Instead of collapsing into a heap of self- pity, I throw myself like a rubber ball against a wall into attempting to fix the unfixable. While it certainly beats dying from ovarian cancer, my body feels broken. It is unrecognizable to me as my own. It’s not just the 20lbs I have put on since surgery (which is standard for women in surgical menopause), or the unpredictability of my health which makes making life plans as well as working a regular job near impossible, or the times I bleed for months because of hormonal imbalance and end up so weak a breeze could blow me over. Rather it’s this indescribable feeling of emptiness where once there was passion, hope, excitement, spirit, vitality and life force. Every day since I woke up from this devastating surgery I am longing just to feel like and be me, the person I was before; I wonder if that person will ever return or if I will simply continue to exist as the ghost of my former self. I feel like I have been robbed of the full and happy life I could have lived because no one, not even doctors, are fully aware of the impact of the surgical removal of ovaries.
Hormone Replacement Therapy Doesn’t Work Well For Everyone
Managing my health condition has become a full time job. The medications I take to compensate for my missing hormones do a poor job of imitating the elegance of the real thing. I have been bounced around to every kind of medical specialist, tried dozens of hormone replacement drugs, and none have given me back any sort of stable quality of life. One day I’ll wake dizzy with my body swollen and up 10lbs with water weight and bleeding heavily, and the next my hormones will have fallen so dangerously low that my face will be ashen, my eyes encircled in red rings, and I feel as though I could pass out. Occasionally I do. I have lost count of the amount of times I have been rushed to the ER because hormone related issues have left made me so ill. Once there, they often can do very little for me other than rule out something more serious like a stroke or heart attack and wait for my vitals to stabilize. The doctors, even the good ones, understanding of women’s hormones amounts to a lot of guess-work and shots in the dark based on external symptoms and a basic framework of hormone levels. Unlike most health conditions, there is no clear and careful protocol for treating Surgical Menopause. I, like many women with this condition, feel like a guinea pig in a medical system that seems to have forgotten us because we have what is deemed to be a “woman’s issue”.
At the time of my final surgery I was told by doctors my condition was the same as natural menopause; that I would simply need to take HRT (Hormone Replacement Therapy) and all would be well. My Mother, Aunts, and Grandmothers had been through menopause and seemed relatively unscathed so I assumed I’d be the same.
But the truth is surgical menopause is a chronic health condition resulting in the loss of organs, whereas natural menopause is a phase of life that occurs for all women when they age around 50. Women in surgical menopause have a higher chance of developing dementia and Alzheimer’s, heart disease, Osteoporosis, faster and younger. Women in Natural Menopause still produce low levels of hormones for the rest of their lives to sustain their bodies and well being, we do not. Sure we share some of the same symptoms: hot flashes, insomnia, fatigue, weight gain, but we aren’t the same.
My mother, still vibrant in her 60’s, works a full time job and lives life to the fullest, by contrast I had to leave my chosen profession to work from home because my chronic health condition is so unpredictable that it leaves me incapacitated at times. I have good days, I celebrate them, and also days I don’t have the strength to shower. I have a bathroom cabinet full of prescriptions that are supposed to “fix” me, but so far, I remain un-fixable. A third of my time is spent seeing and calling my doctors and interviewing new ones, another third filling out paperwork and prescriptions, and finally, when I am well enough to actually leave my home, the final third is enjoying my family, the few friends that have stuck with me through this, and doing mundane tasks like doing the laundry.
Why the Silence?
I couldn’t understand how nearly 600,000 women a year in the USA could undergo hysterectomies and oophorectomies that left them in surgical menopause and there was little to no research being done on their quality of life following surgery or on more advanced HRT treatment that could give them their lives back. The HRT drugs currently on the market are static doses that do not mimic the fluctuations of a normal female body and thus, like myself, many women battle daily to feel well and like themselves on them. There is some variety of HRT options from bio-identical to synthetic, but the side effects from these medications are often very severe and for anyone, like myself, who is sensitive to medication in general, finding the right HRT in the right balance can feel like an impossible task and your body has to pay the price of being physically ill for any miscalculations. If men were losing their testicles to cancer and various diseases at the rate women are losing their ovaries, you can bet there would be research dollars, big fundraisers, and funding for more humane and improved treatment options. The male birth control pill was recently developed, and shortly after discontinued because men were complaining of the side effects such as mood changes, muscle pain and acne. Mind you, these are side effects women have been enduring for decades on hormone medications.
Finally, in March of 2015, movie star Angelina Jolie came out and spoke publicly about entering surgical menopause and her BRCA 1 diagnosis. At first I was overjoyed to have such a dynamic woman and social justice crusader champion this cause, but because she was one of the smaller group of ladies who did okay following surgery, the subject quickly disappeared from the headlines into the ether and along with it the hope of sparking more interest in advocacy.
The same year I began an online support group with a fellow Surgical Menopause sufferer that now has well over a thousand members spanning the globe. These women are your sisters, your mothers, your friends, your neighbors, and your co-workers. You would never know what they were going through, because few feel confident, outside of online support groups, sharing their difficulty navigating this condition. While there are some hopeful tales the majority of the members of our group share stories of depression, suicidal thoughts, concern that they will be unable to work or that their husbands and partners will leave them due to the extent of their disability or sexual dysfunction, problems with finding the correct HRT and doctor, side effects from HRT, and doctors who seem to have universally not prepared or warned these women in any way for how this surgery would forever alter their lives.
After hearing hundreds of women’s stories of surgical menopause, I quickly realized the reason for this lack of public awareness: shame and I suppose the fear of exposing themselves as no longer having certain parts made them less feminine. Women didn’t want to publicly talk about their condition and by extension the poor treatment options because it had to do with their vaginas, their uterus, their ovaries, and in many cases, their sex lives. Hysterectomies and oophorectomies are not new, they have been performed for over a hundred years and while they do save women from the ravages of cancer, disease, and death, women seem to be expected to endure their hardship with the chronic conditions they are left with quietly, pleasingly, because they involve our lady parts.
Yes, I am one million percent grateful that I had a surgery to save my life from ovarian cancer, but I have every right to have long moments of frustration for having to live with a chronic health condition that is often brushed under the carpet by the medical community because it is considered a “female problem” and a women’s health issue.
I am disheartened that so many women have to go from doctor to doctor like a honey bee, burning through their finances (the average cost of my consultations with a hormone specialist in NYC ran around $700, completely out of pocket); because there is no clear protocol to treat us other than to put us on a generic hormone replacement therapy plan that cannot possibly account for the wide variety of reactions and variations of the female human body. While HRT is a great first step, the science and research is not adequate for the women forced to live with this condition for the rest of their lives and wanting so very badly just to feel human and be functional. Yes some women do okay with having their ovaries removed, but many more, especially young women whose hormones are at their peak at the time of surgery, live greatly compromised lives because the after care is nowhere near where it should be.
I’ve come to accept that I have a condition that has the word “menopause” in its name, even though I think it should be changed so it wouldn’t evoke shame. I find empowerment in running a large support group and realizing I am part of a greater community that numbers in the hundreds of thousands of ladies in the same boat. I am still young, I am still beautiful, I am still fully feminine and fearless. I find solutions, just like my mother taught me. I can’t cure myself but I try daily to figure this shit out even if I am the Tortoise rather than the Hare in this race for good health. But I also have a chronic health condition and it’s called surgical menopause. And it’s time the world paid attention to us.
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