Part OneBy: Jean Johnson for Fibroids1
With even the brief look at the history of treating fibroids that this article discusses, the saying “you’ve come a long way, baby” seems to call out loud and clear down through generations of women. Indeed, the procedures to treat fibroids that were available for your grandmother and your mother pale in comparison to what today’s modern woman can access.
In order to bring the history alive and breathe some life into the subject, we’re using real people and real stories. Below we share the story of three generations of women who had fibroids along with the types of medical treatment they chose to relieve their symptoms. It’s a saga about change over time that we at Fibroids1 hope you find insightful and empowering.
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Treatments for fibroids include:
hysterectomy
myomectomy
uterine fibroid embolization (UFE)
UFE has only been available the past 10 years and is a minimally invasive procedure that:
Generally does not require an overnight hospital stay,
Has a low risk for infection, and
Is state-of-the-art and allows appropriate candidates to recover within days. |
Understanding where we come from can enable us to chart our futures with greater confidence. Historical lessons surrounding social issues like women’s health are as significant as insights we draw from the more traditional arenas of political and military history.
Grandmother’s Era
Louise Annabelle Mason was born in 1918 to a family of entrepreneurs in a “little town in Iowa.” Some women were having their babies in hospitals at the time. During its first year in 1892, 30 babies were born in the new five-bed maternity wing at the University of Pennsylvania hospital.
But Louise’s mother, Fern Guinevere Mason, had her daughter at her mother’s home where a midwife helped with the baby. Little did the group of women involved in Louise’s birth realize then, early in the 20th century, how much modern medicine would change during the lifetime of the newly-arrived Louise – and how significantly advances in women’s health would affect the tiny infant as she matured.
“Back then, women’s business was really a hushed, private affair,” said Louise Mason who now lives in Portland, Oregon. “I don’t really know if my mother or grandmothers had any trouble with fibroids like I was to have later on because those things just weren’t talked about. Childbirth was bad enough – an embarrassment almost. So I imagine that they just put up with the bleeding and whatnot and just assumed it was the curse of being a woman. I’m just not sure. I don’t even know if they knew whether or not they had fibroids.”
Mason crosses her slim legs and fluffs her new perm while she lets her mind run to the that early period in her life when she was surrounded by a large Midwestern family complete with enough aunts to guard a child from all harm. “I do know that when my mother got old and finally had to call me to come help her move out of her home, the poor thing had lost control of her bladder and was pinning rags into her underwear. I’m guessing that she got the idea after all the years of doing the same thing during her menstruation and any heavy bleeding she had if she had the fibroids. I wouldn’t be surprised if she did, because look at me, my daughter and granddaughter – all the same on that score and from what I understand it does come down through the generations.”
Clearly the era during which Mason was born and her mother lived was a time when advances in obstetrics and gynecology were just beginning. Although the nation’s oldest school of medicine at the University of Pennsylvania opened in 1765 and offered instruction in obstetrics – and the American Medical Association (AMA) was established in 1847 – 40 percent of all births in the United States were attended by midwives until around the time of the First World War in 1915.
As far as treatment for fibroids, although hysterectomy was mentioned in Greek manuscripts 2,000 years ago, the first indication of the surgery being performed was in the 16th century. Even though the procedure was done vaginally and not via an abdominal incision, it was usually fatal. Further, progress through to the 19th century – by which time hysterectomies were being done abdominally – did little to inspire confidence. It was not until advances in anesthesia, blood transfusion, antibiotics, and surgical techniques during the first half of the 20th century, that hysterectomies became more reliable. When it did happen, however, the surgery took off and by the 1950s, hysterectomies were the second most common operation among women.
Similarly, myomectomy, the surgery that removes fibroids while leaving the uterus intact, was done as early as 1845; but 5 out of 12 women died. Indeed, in 1875 AMA chairman W.H. Byford said that myomectomies were “so dangerous and difficult as not to be thought of except in desperate conditions,” according to eMedicine.com.
Byford was most likely referring to data that, by the turn of the 20th century, showed that while hysterectomies had improved to a 6 to 7 percent mortality rate, abdominal myomectomies still ranged in the area of 40 percent. Forty women out of every 100 lost their lives while undergoing the procedure.
“I guess from all your statistics,” said Mason, “it’s easy to see why my mother and aunts just took what problems they had with fibroids in stride. And also, I guess your research explains why when it came my turn, I went to the hospital and had a hysterectomy.
“It was in 1962. My oldest son was in eighth grade. I remember because I was in the hospital for a week just before his graduation, and it was a chore I’ll tell you. I had him when I was 30, so that made me 44 I think. Forty-four and thrown into premature menopause overnight. It’s not something I’d wish on anyone else.
“The recovery was quite something, not only from the hormonal changes but also the incision in my belly. When they cut down through all those muscles, you know it for months afterward. It hurt just to laugh or cough. And here I had four youngsters at home. But that was what it was like back then. Women had hysterectomies, and children had their tonsils out.”
Mason’s point is well taken. As early as 1948, reports began revealing that hysterectomies were being performed in cases where they were not entirely necessary. Then in the 1960s when the women’s movement began, further inquiry into the subject ensued. The end result was that by 1978, a Congressional hearing on over-performed operations focused on both hysterectomies and tonsillectomies. While a clinical trial on the latter demonstrated that most rationales for removing tonsils were inappropriate – which effectively ended the brisk business in tonsillectomies – to date there still has not been a definitive study on the hysterectomy.
Still, in 1981 the Centers for Disease Control and Prevention found that 15 percent of the hysterectomies done in the United States were questionable. A decade later in 1990, Blue Cross Blue Shield of Illinois undertook a study that found even more egregious problems: one third of the operations were unnecessary. It was not until 1989 that the American College of Obstetricians and Gynecologists wrote formal guidelines for hysterectomies.
As it turned out, Mason might have had a myomectomy instead of a hysterectomy in 1962 had she known it was an option for fibroids treatment. Despite the procedure’s poor success rate in the late-19th century, one study of 171 women at Mount Sinai Hospital who had myomectomies in 1942 showed that all had survived. At the same time, other accounts state that into the 1950s, five out of every 100 women that had a myomectomy did not survive.
“My doctor didn’t mention anything other than a hysterectomy to me,” said Mason. “But I was a mess. I needed help and right now. All that bleeding and me coming unglued emotionally. It was a very hard time and things got better once I got over the surgery, they really did. Even though my surgery might be outdated now in some ways, I’m glad I had it and it was good for me.
“The other women I knew or read about at the time – that’s what they were having too. So it wasn’t out of line that we knew of. I was way too busy raising my family to keep track of what was going on in Congress or all these studies the doctors were running. I guess we were a little naïve back then and just expected that the government and doctors would do the best they could for us.
“That’s how it was after the war, you know. We were just happy to be Americans then and over all those years of the Depression,” said Mason looking at her daughter. “And I really had not heard of a myomectomy until my own daughter had one when she was in her thirties. That was when it was, wasn’t it honey?”
For Mason’s daughter’s answer, along with her daughter’s and granddaughter’s experiences with fibroid treatment, see the second part of this two-part article.
Continued in Part Two
