I Spoke To Over 40 Women About Their Medical Experiences. They Offered A Disturbing Warning.
Years ago, I had exploratory gynecology surgery that I was sure I didn’t need. I was scared to death, attached to tubes, and as hospital orderlies wheeled me into the freezing cold operating room, I thought, Why did I ever agree to do this?
I was in my forties and had been taking hormones that my OB/GYN prescribed for hot flashes. After a year, he suggested I switch to a newer medication, which I did, but almost immediately I developed vaginal bleeding.
I was positive the new medication had caused it, but my doctor disagreed. After performing the appropriate tests, he insisted I needed exploratory surgery right away to see what was going on.
It’s important to note that my doctor was worried about ovarian cancer, and had he been right, he could have saved my life. But he wasn’t. The surgery found no cancer. I went back on my old hormones and the bleeding stopped.
I’m still ashamed that I didn’t listen to my instincts.
I had several options short of surgery that I could have pursued first but didn’t. I could have switched back to my former medication to see if the bleeding stopped. I could have done my own research on the new drug so I could at least present the doctor with some research-based evidence, not just my strong belief. I also could have gone for a second opinion.
I’ve since spoken to more than 40 women about my experience, and listening to their stories, I’ve discovered that I’m not alone in shortchanging myself regarding a medical decision. I’ve learned that there are many ways women can inadvertently undermine themselves when it comes to their health.
Some, like me, simply take too passive a role with their doctors, perhaps from a culturized reluctance to challenge authority. Others blame themselves for getting sick in the first place. One woman expressed that she was convinced she got lupus as payback for having been mean-spirited as a child. Some women wait too long to get to the doctor, letting other responsibilities — children, work, ailing parents — take precedence.
One woman I met delayed her mammogram because she had no one to take care of her son. A few months later, she finally was able to reschedule, and now she has stage three breast cancer and is facing a long, difficult recovery.
May was Women’s Health Month, but there’s never a bad time to explore how women can remove the personal barriers that prevent them from seeking the best possible healthcare. There’s also never a bad time to discuss another huge component of women’s healthcare issues: The gender bias that still persists in the medical community.
These gendered attitudes don’t develop in a vacuum. There is a fraught history of centuries of women’s bodies mocked, minimized, disparaged, or even ignored.
In Ancient Greece, many believed that gynecological disorders made women’s bodies inherently pathological. Aristotle thought of women as “mutilated males,” as Caroline Criado Perez explains in her 2021 book “Invisible Women: Data Bias in a World Designed for Men.”
The “hysteria” diagnosis in the Victorian age amounted to a dismissal of many ailments. In “Complaints & Disorders: The Sexual Politics of Sickness,” authors Barbara Ehrenreich and Deirdre English explain that during this time, men subjected their wives to oophorectomies (removal of the ovaries) to “tame their unruly behavior.” After surgery, they were returned to their husbands, “tractable, “orderly” and “industrious.”
More than three centuries later, in 1968, Dr. Robert Wilson, a prominent commentator on menopause, wrote in “Feminine Forever,” “the unpalatable truth must be faced that all postmenopausal women are castrates… No woman can be sure of escaping the horror of this living decay.”
And while the specifics today are more subtle than they were in the past, the tradition of dismissiveness toward women hasn’t elapsed completely.
“There is a fraught history of centuries of women’s bodies mocked, minimized, disparaged, or even ignored.”
Years ago I had a biopsy for a lump on my back. After it was completed, I asked the doctor what my next step would be if the biopsy turned out to be malignant.
As he turned to walk out the door without answering, he said, “Why don’t you leave the driving to us!”
But when my husband stepped in and asked the same question, the doctor explained I would need to come back so they could be sure they “got it all.”
At 18, one of my daughters was diagnosed with TMJ (temporomandibular joint disorder), a jaw disorder in which chewing becomes quite painful. At the time, the recommended treatment was removing the disc in the jaw and replacing it with one made of Teflon.
But the treatment carried a major risk: It was possible that during the surgery, one or more of the facial nerves could be nicked, which can cause partial paralysis of the face. Since the ramifications were so terrifying, we decided to find out if there were other options.
It turned out there were two camps in the TMJ community. One was 100% for surgery ― the other, 100% against it. There seemed to be no middle ground.
One doctor advocating for the surgery told me, “If you don’t allow your daughter to have surgery, I strongly suggest you go for psychological therapy. You really need to examine your unconscious hostility toward your daughter.”
Another expert in the nonsurgical camp told me, “If it were my daughter, I would just wait and see. Mothers who rush their children into surgery need to examine their motives. Our children don’t need to be perfect.”
Though my husband was present at both appointments, those comments were directed toward me.
She did not have the surgery. Luckily, that was the right choice. The Teflon implant apparently caused a severe reaction associated with bone destruction, pain, and in some cases, severe facial disfigurement. It has since been withdrawn from the market.
Even when men and women have the same symptoms and conditions, they’re often diagnosed and treated differently. A 2018 review of scores of studies shows that when it comes to pain, for example, women are termed “emotional,” whereas men are “brave.”
Fortunately, this unhappy situation of bias and dismissal may finally be starting to change.
Comedian Amy Schumer has spoken openly about her endometriosis (a painful disease where tissue that normally lines the uterus grows outside it) and her trichotillomania (a hair-pulling disorder). Actress Rita Wilson has written extensively about her breast cancer.
Singer Demi Lovato is open about their bipolar disorder, bulimia and substance abuse that led to their stroke and heart attacks. Olympic gold medal champion Simone Biles drew global attention to her mental health concerns.
Destigmatization is the first step on the road to transparency and health.
With the bravery of these women as inspiration, as well as my own research and life experiences, I’ve learned to have the courage to question my doctors to be sure I understand fully what they are saying. That way we can work together more efficiently.
I know the importance of getting a second opinion, and as in the case of my daughter and her TMJ, maybe even a third. It takes courage and strength to question decisions that affect my health.
Never again will I say to myself, “Why did I agree to that?” Because I will know why.
Susan Salenger is the author and researcher behind “Sidelined, How Women Manage & Mismanage Their Health.” The book examines the many ways in which some women manage and sometimes mismanage their healthcare. Born and raised in Los Angeles, Susan attended UCLA to study English. After graduation, she worked alongside her husband Fred for 25 years at their production company, Salenger Films, which produced corporate training and development films distributed worldwide. Today, at age 79, Susan lives in Northern California to be near her incredible family which includes her two daughters, four grandchildren, a cat named Max and a dog named JD (Salenger). When she is not speaking about her book or spending time with family and friends, you will find Susan power lifting to stay in shape. For more from Susan, visit her website, or find her on Instagram, Facebook, Twitter and LinkedIn.