I first heard Stacia Alexander share her hysterectomy experience in March 2023, on a panel hosted by the group Let’s Talk Menopause. I was stunned by her candor as she recounted being plunged into surgical menopause at the age of 45.
She had chosen to get the procedure in 2015, after two decades of dealing with painful, recurrent fibroids. But her surgeon, she said, hadn’t laid out all her options. He had not clearly explained to her the function of her ovaries, nor the consequences of removing them, said Dr. Alexander, a psychotherapist. Instead, when she was already on the operating table, she recalls he asked her which of two hysterectomy types she wanted; flustered, she chose the one he said would help her avoid future surgeries.
He then removed her ovaries, uterus and fallopian tubes, according to her medical records.
Dr. Alexander soon began experiencing dramatic changes in her metabolism, moods and the mobility of her fingers. It would take three years for her to piece together the fact that these changes had been brought about by the removal of key hormone-producing glands — her ovaries — and that she would benefit from hormone therapy.
She hadn’t realized she had the choice of keeping her ovaries. Nor did she know that, by current medical standards, there was no reason for them to be removed in the first place.
Dr. Alexander’s story haunted me for months. Every patient should know their options before a surgery, and no surgery should be a puzzle that a patient needs to solve after the fact. I wondered: How many patients like her had also been left in the dark?
Many, according to six OB-GYNs who perform hysterectomies I spoke with during the three months of reporting that ensued. Often hysterectomy patients don’t understand their full range of options. Some leave the operating room without realizing they no longer have, say, fallopian tubes, or a cervix, as I reported for The New York Times’s Science section.
How could medicine have failed so many patients, and failed them so monumentally?
Part of the answer lies in medical miscommunication: rushed consultations, the use of confusing medical jargon, or the failure of doctors to fully explain a patient’s options. Many patients also lack a deep understanding of reproductive anatomy, and are either too embarrassed to ask for clarification or simply don’t know what to ask in the first place.
“A lot of patients don’t understand that they can choose which organs can be removed,” said Andréa Becker, a medical sociologist who studies how patients understand their hysterectomies.
As a health reporter who has covered medical topics as intimate as genital nerve damage and clitoral injury, I know how difficult it can be for patients to share vulnerable medical experiences with a journalist. In this case, I also knew it would be a challenge to find people willing to talk to me about surgeries they may not have fully understood. I had to earn that privilege.
I started by emailing the moderators of several online forums for hysterectomy patients and people in menopause, as well as OB-GYNs. I asked them to forward to patients a note I had written introducing myself, explaining the goal of my article and leaving my contact information if they decided they wanted to reach out.
I spoke with several people first “on background,” meaning that their stories could provide context for my article, but their names would not be included without their consent. If I wanted to include any part of their story, I explained, I would contact them again to get permission, review major details and answer any questions.
Many of those who reached out were motivated by a desire to help prevent others from going through what they had.
One woman, with fibroids, had had her ovaries and uterus removed in 1999, at age 52. Her doctor had prescribed estrogen pills to alleviate some of her symptoms, but three weeks later, she developed a blood clot that led to a stroke. She learned she had a genetic clotting condition and could no longer take estrogen. In the 25 years since, she has suffered from poor sleep, hot flashes and painful arthritis. “If I knew before my hysterectomy what I know now, I definitely would have opted to keep my ovaries,” she told me.
At the same time, OB-GYNs emphasized that, for some, a hysterectomy can be a profound solution to chronic pain and bleeding. Dr. Marisa Brunetti, a 41-year-old veterinarian who had experienced endometriosis and “horrific” menstrual periods for more than a decade, was delighted to learn that a hysterectomy was an option — and that it would be far less invasive than the open abdominal hysterectomies she performed on dogs and cats.
Listening to these stories, it was clear to me that a hysterectomy itself, like most medical procedures — was neither inherently good nor bad. People like Dr. Brunetti, who were comfortable researching and asking questions, had had a very different experience from those who had felt rushed, blindsided or like they’d been given incomplete information.
I am grateful that the article has moved readers to speak up in the comments section about their varied hysterectomy experiences. Some have shared anger and remorse; others have written about their relief after a hysterectomy put an end to years of suffering.
By reporting on a few of these experiences, I hope we can continue to widen the conversation and lift the stigma surrounding a shockingly common, yet little-talked-about, procedure.
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