For most people, today is the day-after 9-11. For me, it's the 10-year anniversary of a different life-changing event.
I don't watch television in the daytime, and I rarely watch live TV. I learned about 9-11 when Mike came home from work early.
The first thing I did was call Bill West, Sr. in Dawson, Georgia -- because his daughter, my best friend since high school, lived in New Jersey and worked in the financial district. She took the train into the World Trade Center station every day.
When he told me that she was okay, I made my second call, to Virginia Mason Hospital in Seattle. I wanted to know if my surgery, scheduled for 9-12, was still "on." It's a testament to how disorienting 9-11 was that I would question, here on the west coast, whether or not my surgery would take place the following day.
We quickly tired of the broken-record-like sequence of images showing the planes flying into the Towers, and turned off the TV. As anyone who has had major surgery knows, my afternoon was spent drinking copious quantities of foul-tasting liquid designed to completely empty my bowels prior to surgery.
On 9-12-2001, I underwent the second-most common surgery for women in the United States: a hysterectomy. The most common surgery is a c-section (cesarean). Approximately 600,000 women in the U.S. have a hysterectomy every year. That's more than one per minute, seven days a week, 365 days a year.
In a five-year period, 2000-2004 (the most recent data available), 3.1 million women had a hysterectomy. In 2000 (the most recent data available), approximately 20 million American women had undergone a hysterectomy. To put that number into context, in 2007, an estimated 6.4 million American women were living with a diagnosis of breast cancer. The difference is a factor of three.
Think about that for a moment.
The second-most common surgery for women in the U.S. is one designed to surgically remove the hidden organs that define a woman anatomically (child-bearing) and critics assert most of these operations are unnecessary. But the leading health fear for women is breast cancer.
Hysterectomy: A Brief History
Abdominal surgery is a fairly recent medical accomplishment. Ellis Burnham (Lowell, Massachusetts) performed the first successful abdominal hysterectomy in 1853, and then "there was little advance in hysterectomy techniques until ... 1988."
In the early 1990s, laproscopically-assisted surgery became an alternative to the 6-inch whack across the abdomen. It's called a laparoscopically assisted vaginal hysterectomy. But, as Stefanie Weiss wrote in the Washington Post in 2004, "The Toyota dealer isn't going to tell you about the Kia, and doctors may not tell you about minimally invasive hysterectomies if they don't do them."
And no one told me about them. Neither did the Internet.
This was 10 years ago. It may be hard to believe, but back then there wasn't the wealth of health information online that there is today. I (gasp) went to the library to try to find out information about women's health. The books, in general, were so old that I changed course and visited bookstores. Those comfy chairs helped turn the bookstore into a form of lending library. [If you are considering having a hysterectomy, then please buy and read Screaming To Be Heard: Hormonal Connections Women Suspect, and Doctors Still Ignore, Revised and Updated : Amazon.]
A hysterectomy is the surgical removal of the uterus; sometimes the cervix and/or ovaries and fallopian tubes are also removed. Although most hysterectomies are uterine only, mine was a "complete" hysterectomy because the offending organ seemed to be my ovaries.
Seemed to be is also an important consideration.
I had a hysterectomy because my medical team did not know why I was sick. I had been hospitalized for 10 days in France the prior month because I had peritonitis; the only abnormality my French doctors detected was an ovary swollen (oophoritis) to the size of a large orange or small grapefruit. But within 24 hours of stopping a month-long treatment of antibiotics, my infection came calling again.
Yes, I got a second opinion, but I almost didn't because I was sick, exhausted and emotionally overwhelmed.
I phoned Mike from Virginia Mason after my CT scan and told him that I had scheduled my surgery. Without a second opinion. He reminded me that I had insisted that I would not undergo such radical surgery without a second opinion. OK. I made an appointment with my ex-gyn, who was a fertility specialist. When he told me that he would recommend a hysterectomy for his wife if presented with similar information, I left the operation on the schedule.
Hysterectomy and Hysteria
The Centers for Disease Control note that from 2000 through 2004, the rate at which hysterectomies were performed was highest among women aged 40–44 years. I had just turned 46.
Hysteria is a Greek word at its root; the ancients linked "hysteric disturbances" to the female uterus or womb (hystera). Thus "hysteria has commonly been conceived as a pathology to which women are exclusively susceptible. If it is based in a physiological source that is gender specific (the uterus), then the illness itself could only occur where this prerequisite physiology is present."
Although removing the uterus is no longer considered a cure for "hysteria," there are a lot of elective hysterectomies in the U.S. Most are not because of cancer; in the U.S., there are only 23,000 new cases of ovarian cancer each year. (That would account for 4 percent of all annual U.S. hysterectomies.) Uterine leiomyoma (fibroids), endometriosis, and uterine prolapse accounted for 3-in-4 hysterectomies from 1994 to 1999. Other symptoms that lead to hysterectomy include heavy bleeding.
Unless the data have changed dramatically, you are more likely to have a hysterectomy if you live in the South -- seven of the top 10 states for frequency are southern. In Mississippi, Alabama and Louisiana, half of all women older than 45 reported that they had undergone a hysterectomy. The "safest" (less likely) states of residence are in Yankee-land; in Massachusetts, New Jersey and New York, the prevalence was only 1-in-5 and in New Hampshire, Vermont and Connecticut the prevalence was only 1-in-4.
Why? Are southern women so disdainful of their bodies that they turn to a major surgical intervention? Or is the medical establishment more paternal and, perhaps, still internalizes the Greek mythology connecting emotional distress with the uterus?
After all, Adriane Fugh-Berman wrote in The Reader's Companion to U.S. Women's History (page 27, 1999):
Excessive medical and surgical interventions on women are a tradition in U.S. medicine. Only one hundred years aog it was thought that a physiological basis for female insanity existed in the reproductive organs and that the obvious solution was surgery...
Although U.S. doctors no longer believe that women's reproductive organs cause mental illness, women are still treated very differently than are men.
Surgical Menopause, Health and DES
If this were a classic mystery story or murder investigation, one of our first questions would be "who benefits" from hysterectomies?
- Surgeons, of course, because medicine in the U.S. is so fragmented. (When your only tool is a hammer, all problems look like a nail.) No surgery; no income. Critics assert that as many as 9-in-10 hysterectomies are unnecessary.
- Wyeth/Pfizer, the manufacturer of Prempro and Premarian. According to the National Uterine Fibrous Foundation, we spend more than $5 billion dollars annual on hormone replacement therapy. Most of that is from these derived-from-pregnant-mare's-urine drugs.
In 2002, the federal Women's Health Initiative (WHI) study found that hormone replacement therapy based on Prempro and Premarian led to risks of breast cancer, coronary heart disease, strokes, and blood clots that outweighed the benefits of reduced hip fractures and colorectal cancer.
As my oncologist dryly reported to me in July (I have LCIS), in the intervening years some of the early reports from the WHI have been revised and NHI research shines no light on health risks or benefits for those of us using bio-identical estrogen. Yet any further study of estrogen replacement is DOA because of the risks identified in that flawed study.*
NIH funding for endometriosis research increased from $12 million in fiscal 2007 to $15 million in fiscal 2012 (projected). In 2001, combined NIH funding for endometriosis and uterine fibroids was only $3 million. Thus, under the Bush and Obama Administrations there has been a demonstrable increase in women's health research, at least in this area.
But, in my opinion, more research and education in women's health is needed. For example, NIH invested $295 million in prostate cancer research in fiscal 2007; projected fiscal 2012 spending is $337 million. There are about 241,000 new cases of prostate cancer each year; there are about 600,000 hysterectomies and endometriosis is a major rationale for the surgery. More women than men die of heart disease and yet too much research into heart disease primarily uses men for the cohort.
My 10-year post-surgical menopause journey has been marked by resistent-to-dieting weight gain (there are some promising results from the WHI on calcium and Vitamin D), elevated blood pressure, memory issues, lost muscle tone (testosterone-related), sleep apnea and acute diverticulitis. In 2009, I learned that my sleep apnea could have been responsible for my elevated weight and blood pressure. In 2011, after my colon resection, I learned that my abdominal infection in 2001 could have been linked to diverticulitis.
My abdominal surgeries have revealed extensive adhesions (scarring) and evidence of endometriosis. I am a DES daughter; related to that exposure, I have also had cervical curettage post-colposcopy (a potential contributor to abdominal infection). Diethylstilbestrol (DES) is a synthetic estrogen first manufactured in 1938 and prescribed until 1971, almost 20 years after research showed that DES did not prevent miscarriages or premature births. An estimated 5-10 million women (what a range, that) and their children were exposed to the drug.
So I probably was not a good candidate for a non-traditional option to a whack across the abdomen. I had extensive endometriosis and unexplained pelvic pain/infection; my doctors needed to get a good look at my insider. There was also an oncologist on the team, in case they found cancer.
And yet. The alternative surgery wasn't even mentioned as an option that should be rejected.
Would that happen today? I'm sad to say the answer is "probably."
My take-away for anyone who has read this far: your health is in your hands. You might be lucky enough to find a physician or naturopath who approaches health in a holistic manner, but it is very unlikely in America's specialized and fragmented health care system.
* The average age for participants the Women's Health Initiative study was 63; the median was 60-69 and, I believe, much older than 63. (Questions Arising Since the HRT/WHI Newsletter, September 2002, pdf) The average age for women entering menopause in the U.S. is 51. Thus, on average the study cohort began taking HRT a decade after menopause.
The study is misnamed; the only hormone tested was "conjugated equine estrogens" which is the HRT known as Premarian. (Prempro also contains Progestin).
"Other WHI publications have suggested possible heart benefits in women aged 50-59 or for those who started hormone therapy less than 10 years after menopause." 2007 update.