Excerpted from Misinformed Consent: Women's Stories about Unnecessary Hysterectomy by Lise Cloutier-Steele (Next Decade, Inc., 2003). For more information about the author and her books, visit her website at misinformedconsent.com.
As I contemplate my much larger face in the mirror, I wonder if there will ever be a time when I can be more accepting of the new me. I know the change in my weight is directly linked to the hysterectomy I had in October 1991 and to the estrogen replacement therapy I have been on ever since. The extra weight will likely never come off, and yet I continue with diet programs, hoping that all the plump areas will one day disappear.
Don't ask me where my head was when I agreed to surgical removal of my reproductive organs, I just don't know. At the age of thirty-eight, I am embarrassed to say, I was clueless about the role my reproductive organs played beyond their childbearing capability. When I compare the symptoms I had before surgery to the complications that surfaced after my hysterectomy, I realize that I am no further ahead. In fact, my quality of life has taken a nosedive.
It wasn't until January 1998, when I saw a television program on sexual desire, that I made the connection between my extinguished libido and my hysterectomy. The overload of information from that program was mind-boggling. Many of the young women interviewed on the show discussed their loss of sexual desire and the effect of this loss on their relationships. I felt numb when one guest spoke about her depression and her loss of sexual drive and sensation following her hysterectomy, and how she had not felt like a whole woman since.
She was talking about me.
I felt relieved, sad, and angry all at once. It wasn't the first time I had experienced a mixed bag of emotions; I ride an emotional roller coaster almost every day. But this time the feelings were much more intense, and they made me realize that I had a lot of work to do. Little did I know that my research into the effects of hysterectomy would lead me to so many other women just like me, and eventually to this book.
These new connections quickly translated into ongoing support, encouragement, and friendships with very special women whose hysterectomy stories had to be told. I wanted women facing the possibility of hysterectomy to be afforded a glimpse into the lives of women who had been through the procedure and who were willing to share their innermost secrets in the hope of sparing others from an irreversible, often unnecessary, surgery. This book is about women hoping to help other women.
As the contributions poured in and I read each story for the first time, I was astounded, both at the wealth of information these women provided and at the many parallels to my own experience. I wasn't alone after all. I immediately felt a strong bond with all the contributors who, like me, are determined to find their way back to better health.
We know that many women who have hysterectomies feel absolutely wonderful afterwards. But large numbers of women have had markedly negative experiences with hysterectomy, and growing numbers of hysterectomized women are now speaking out about the ill effects of this drastic surgery. It may well be that those glowing reports on the positive outcomes of hysterectomies are not entirely accurate. Very little information is available about the outcome of surgery from the patient's perspective. Without more and better research into the long-term effects of female castration, women cannot truly give informed consent to this operation.
In the past, women typically kept quiet about personal health-related issues such as sexual dysfunction, mood swings, menstrual problems, and depression. I know my mother would have had tremendous difficulty discussing these subjects with any doctor. In her day, it was simply not done. Today's women are more open. I feel strongly that discussing the potential negative effects of hysterectomy is key to slowing the alarming rate at which this surgical procedure is performed.
Hysterectomy appears to be one of the most popular and often unnecessary surgical procedures of the 1990s and into the new millennium. In Canada alone, for instance, sixty-two thousand hysterectomies are performed each year. This represents one of the highest rates in the world, second only to the United States, where roughly seven hundred thousand are performed annually, and almost double the rate of most European countries. In fact, 37 percent of Canadian women will have had a hysterectomy by the age of sixty. By that same age, one in every three women in the United States has had a hysterectomy; by age sixty-five, the proportion increases to one out of two. Most of these procedures, as many as 90 percent, are elective. And, argues Dr. Stanley West, author of The Hysterectomy Hoax, nine out of ten hysterectomies are unnecessary.
In the province of Ontario, where I live, hysterectomy is the most commonly performed surgical procedure. More than twenty thousand were performed in 1994-95 alone. The choice of hysterectomy may coincide more with the inclinations and surgical abilities of local gynecologists than with medical imperatives; there seems to be little rhyme or reason in how doctors prescribe and perform this often life-altering operation. According to the Toronto Institute for Clinical Evaluative Sciences (ICES), the rate of hysterectomy per region ranges from 274 to 797 per 100,000 women. Not surprisingly, in early 1998, the Ontario Medical Association published a report (not circulated to the public) stating that too many hysterectomies were being performed in Ontario.
But a report addressing the issue of the overuse of hysterectomy in Canada was made public in June 2002. It confirmed that Canada's situation is similar to that of the United States. Dr. Donna Stewart, professor at the University of Toronto and chair of Women's Health at the University Health Network, led the expert panel on hysterectomy practices in Ontario. A complete copy of the panel's report can be viewed at www.ontariowomenscouncil.on.ca. (See Medical Resources in Part III for more information on the Ontario Women's Council.)
According to Dr. Stewart, there are many factors contributing to the high rate of hysterectomy. For instance, many doctors are unwilling to explore other less invasive treatments with their patients. This is an unfortunate situation in itself, because if a woman is not offered less drastic options, she is not given the opportunity to make an informed choice.
Education and social class are two other important factors, and Dr. Stewart's report shows that the hysterectomy rate is highest in poor, rural regions where the level of education is low. Similarly in the U.S., the hysterectomy rate is highest in the southern states. And surprisingly, some women view hysterectomy as a permanent solution for birth control, while others feel it's the "thing to do" because it's what their mothers and sisters did before them. In any case, none of the above explanations justify a prolongation of the current situation of unnecessary surgeries performed on female patients, but all confirm the need for greater education efforts to help women and their doctors discuss less invasive alternatives to hysterectomy.
These numbers are all the more disturbing when we consider that the substantial majority of hysterectomies are very likely unnecessary. Along with Dr. West, Sandra Simkin, author of The Case against Hysterectomy, argues that 90 percent of hysterectomies are unwarranted and do not effectively treat the conditions for which they are prescribed. Surgically excising the uterus, Fallopian tubes, cervix, and/or ovaries is necessary only if cancer has been detected in one of these organs. Often, however, women are convinced to surrender their healthy reproductive organs "just in case" they might one day become cancerous. The logic of this approach is fundamentally flawed, and reveals how little the medical profession seems to value women's reproductive organs. Doctors rarely, if ever, urge men to surgically excise healthy testicles "just in case" they might one day become cancerous! As you will read in my personal story, my family physician used this scare tactic, among others, to get me to agree to a hysterectomy. It worked.