Every time I went to the doctor’s office and filled out a patient form, I always drew dark X’s over the family medical history section — all the while wondering what it would be like to know if I am at risk for certain diseases or if any of my current conditions might have been detected earlier. But as an adoptee born in New York state, my birth records were sealed [editor’s note: in November 2019, New York state signed a bill into law that will allow adoptees to obtain their birth certificate]. So at each appointment, those blank spaces always reminded me of the birth mother I’d been searching for more than 20 years to find.
As a child, I dreamed of knowing if she had my gray eyes or was artistic like me, but as I got older, finding my natural parents wasn’t just about connecting to my identity, but to my DNA and medical history. It seemed unfathomable that it was not possible for me to obtain basic yet critical information about my own body.
Since I was in high school, I have suffered from debilitating cramps, heavy bleeding during menstruation lasting several days, severe back and leg pain, painful bloating, fevers, and chronic fatigue. In my mid-twenties, I visited one Park Avenue OB-GYN after another who dismissed my symptoms simply as unpleasant periods. It was suggested on multiple occasions that I had a low threshold for pain and was ushered out their doors with prescriptions for highly-addictive painkillers and no follow up appointments.
As my situation worsened, the need to obtain my family medical history became even more dire. One morning, I woke up in my Manhattan apartment unable to move and in 2002, my adoptive father bought me a one-way plane ticket to Georgia. There, doctors told me that I most likely had endometriosis — “the working women’s disease,” as they called it — and was asked what my plans for pregnancy were, which they believed to be a cure (The Endometriosis Foundation of America has since debunked this myth). A few months later, I passed out on my apartment floor from pelvic pain and was rushed to the ER where I had surgery and was diagnosed with Stage 4 endometriosis.
A family reunion
Searching for my birth mother was often one painful dead end after another, but lacking a connection to where I came from is what ultimately drove me to press on. I knew that having access to my personal history was worth every late night I spent with my friend and search angel, Jodi, building possible family trees, emailing and calling third and fourth cousins, both of us desperate to find a woman who was maybe named Mary Mayo.
For nearly two decades, our search yielded no Mary Mayos matching the vague description I was given until December of 2018 when we received some additional search support. Fast forward seven months to a blistering summer day in Brooklyn: I was handed a black and white photograph of a young woman with my celestial nose wearing a choker adorned with a cluster of rhinestone stars, the same kind of necklace I wore in my twenties right down to the glittering constellations and ribbon tie. The following day I met my mother, Mary Mayo, and for the first time in my life, saw pieces of me reflected in someone else’s eyes. She was real and alive and mine.
My mother and I do have the same eye color. We’ve scoured vintage stores for thrift store finds and sewn clothing without a pattern since we were old enough to thread a needle. We also both started menstruating at a young age (me at age ten, her at age eleven) and have endometriosis. In a letter she wrote to me after our reunion, she listed her health issues. Endometriosis was medical ailment number two. From what she recalls, the pain began in her mid-twenties and continued for several years. She experienced extreme bleeding with large blood clots. A gynecologist diagnosed her with endometriosis without surgery or a care plan. “He didn’t even give me medication,” she wrote me. Having researched the disease for many years, I suspect that my mother had many other symptoms she’s never attributed to the disease.
My newfound medical history
Since I had never met my mother until that day, it seemed highly likely that endometriosis could be passed on, so I spoke with several doctors about the correlation between the disease and genetics. While all agreed that there is a greater risk factor for those who have a female family member who suffers from it, they had varying specifics on what the genetic connection is.
“Research has shown that endometriosis has a multifactorial inheritance pattern. In other words, while there is clearly a genetic link involved, it is a little more complicated than many other genetic traits. There is no question that a woman who has female relatives with endometriosis has a significantly increased risk of getting the disease herself,” Dr. Kaylen Silverberg, a reproductive endocrinologist at the Texas Fertility Center, tells SheKnows.
However, there is no way of knowing if you are at risk. “At this time, no specific genetic marker for endometriosis has been identified,” she says. “Therefore, just as there is no blood test to determine if a woman has endometriosis, there is no genetic test that can be performed, either on her or her developing embryos, to diagnosis the disease.”
The inability to test women for endometriosis underscores just how difficult it is for us to manage our health and to minimize our chances of being undiagnosed for years before we receive treatment. As we now know, endometriosis is a progressive disease and early detection can greatly reduce its growth and affords women the opportunity to care for the disease before it potentially compromises their fertility.
“We know that endometriosis can cluster in families,” Dr. Jennifer Hirshfeld-Cytron, reproductive endocrinologist with Fertility Centers of Illinois tells SheKnows. “Scientists are studying different gene pathways that can go awry leading to endometriosis. It is likely a combination of our genes and our environment.”
A complex, gendered condition
Given the fact that less money is spent on medical research for women’s diseases and women are often not used in medical studies, I was disheartened but not surprised by the lack of concrete answers pertaining to genetics and endometriosis.
“Endometriosis is a complex disease, dependent on a number of factors, with the exact cause [or causes] unknown. However, genetics and heritability play an important role. There is a six-fold increase in endometriosis risk among first degree relatives — for example someone’s mother, sister, daughter, of an affected person. To date, there are 14 genetic regions of research interest — but each one contributes only a very small amount,” explains Christine Metz, Ph.D., professor at the Feinstein Institutes for Medical Research at Northwell Health.
Women advocating for their health has been the focus of several endometriosis campaigns. But without widespread information on the disease on top of generations of misinformation and shame surrounding periods, it’s little wonder that women don’t know what is relevant to share with their doctors.
Dr. Metz also agrees that female patients are also not being heard. “It is sad that patients’ pain is dismissed by so many. How do we change that? Patients need to continue to communicate their symptoms to their healthcare providers. There is some evidence for gender bias in pain; women are more likely to have their pain symptoms dismissed than men. In some cases, patients may not have specific symptoms of endometriosis and in other cases, symptoms can be vague. In these cases, diagnosis is understandably difficult. In women without specific symptoms, they are often not diagnosed until they confront infertility. However, in cases where women miss school, work, and social events every month due to pain, the delay in diagnosis is truly unacceptable.”
A path forward
Had I known that my mother suffered from endometriosis and experienced some of the same symptoms that I had before I was diagnosed, it would have been much easier for me to advocate for my health and call out endometriosis to the doctors who dismissed my pain. As endometriosis awareness has grown, no teenage girl should be suffering in silence; every girl should be educated on what a normal period looks and feels like. All mothers should describe their periods as part of their conversation with their daughter about menstruation. But like me, some of us may not be able to talk to their moms or have access to their family’s medical history.
Destigmatizing periods and educating girls about menstruation and endometriosis in schools will lead to less women living with endometriosis without their knowledge. And adoptees, who are among the only groups of U.S. citizens denied their personal and medical history (according to New York State Adoptee Equality, an activist group for adoptee rights), must continue to fight to have access to their medical records.
I am just beginning to learn the many things my birth mother and I share. We both feel at home by the ocean, believe in numerology and holistic care. We covet butterflies and mermaids and angels. But having endometriosis is one thing I wish that we didn’t have in common. While not every woman will inherit the disease if their mother has it, it is imperative that these conversations between mothers and daughters and doctors and patients become the norm in understanding and protecting women’s bodies from a debilitating, lifelong disease.
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