Guest Post: The “madness” of unnecessary hysterectomy has to stop
In 2006, I was over-treated and permanently harmed by my gynecologist of 20 years. It all started with pelvic pain caused by a fairly large ovarian mass. My gynecologist expressed concern about malignancy and rushed me into surgery with the plan that an oncologist would be available to assist. The cyst and ovary were sent to pathology during surgery (clinically known as a frozen section). The operating room staff waited for the results.
Although they came back benign, the surgeon proceeded to remove the rest of my female organs – my uterus, Fallopian tubes, and other ovary (clinically known as a hysterectomy and salpingo-oophorectomy). All that needed to be removed was the mass/complex cyst (cystectomy).
The effects were immediate and severe, even though I was 50 years old. I could barely function despite using estrogen. The physical effects were bad enough but I also felt dead inside, as if my heart and soul had been removed, and I became suicidal which I had never experienced before. I got a copy of my medical records and began researching. What I discovered was eye-opening.
My gynecologist had been dishonest about my diagnosis, treatment options, and their risks and benefits. He instilled fear of ovarian cancer and told me I had a suspicious mass on my other ovary too. That “suspicious mass” was no longer there at the time of surgery so I suspect it was a normal cycle cyst. There was absolutely nothing wrong with my uterus either. I asked a number of questions prior to surgery but, unbeknownst to me, his answers were dishonest. I have connected with hundreds of women over the last 13 years with similar experiences. Unfortunately, the unnecessary removal of female organs is alarmingly common as are the many adverse effects.
Unnecessary hysterectomies are more common than you think
As part of my research post-op, I learned much more about the hysterectomy industry than I ever cared to know. Approximately 10% of hysterectomies are done for a cancer diagnosis making most of the remaining 90% unnecessary. Despite the low lifetime risk of all gynecologic cancers (uterine/endometrial being highest at 2.9%), a U.S. woman’s lifetime risk of hysterectomy is 45%. Hysterectomy is commonly recommended for any and all menstrual irregularities and even benign ovarian cysts or masses. In other specialties, the diseased tissue is removed, not the entire organ.
The ovary removal/oophorectomy (castration) rate is also alarmingly high. Based on seven years of discharge data, the oophorectomy rate averaged 71% of the hysterectomy rate. The majority of oophorectomies are “prophylactic” despite the average woman’s 1.3% lifetime risk of ovarian cancer. Even when ovarian masses or cysts need to be removed, the ovary is oftentimes removed instead of just the cyst (cystectomy).
The hidden harms of hysterectomy
The prevalence of these surgeries leads women to believe they are benign. But they can be incredibly damaging. Many women report reduced libido and sexual sensation likely due to severing of nerves and blood vessels and possibly other mechanisms. Personality changes are also a common complaint.
There are additional risks of having the uterus removed. Hysterectomy can lead to bladder and bowel dysfunction, prolapse, and incontinence as well as a 4-fold increased risk of pelvic organ fistula surgery. Other risks include certain cancers – rectal, thyroid, renal cell, and brain – as well as heart disease (#1 killer of women). Heart disease risk is 3-fold according to this study. This one went further and looked at risk by age at hysterectomy. It found that “Women who underwent hysterectomy at age ≤35 years had a 4.6-fold increased risk of congestive heart failure and a 2.5-fold increased risk of coronary artery disease.”
The hidden harms of oophorectomy
The ovaries produce hormones a woman’s whole life if she is intact with testosterone levels increasing in the post-menopausal years. Ovary removal therefore causes a whole other set of problems including an increased risk of cardiovascular disease, stroke, osteoporosis, hip fracture, dementia, memory and cognitive impairment, parkinsonism, sleep disorders, adverse ocular and skin changes, and mood disorders. Additionally, ovary removal before age 46 has been shown to accelerate aging by increasing risk of 18 chronic conditions. The Ovaries for Life organization has compiled numerous studies demonstrating the risks of unnecessary oophorectomy, which can be found on their website.
What’s behind this epidemic of overtreatment?
Despite the overwhelming medical evidence that removal of the uterus and/or ovaries is incredibly damaging, these surgeries continue at alarming rates. Why is that?
Gynecology training plays a large role. Even though there are many alternative treatments for fibroids and other conditions, hysterectomy is disproportionately emphasized in training. Each resident must do a minimum of 70 (recently increased to 85 to include robotic hysterectomies). However, there is no requirement for myomectomy (fibroid removal that preserves the uterus) despite 35-40% of hysterectomies being done for fibroids (or as many as 60% according to this article). My surgery was done at a teaching hospital and I was unaware of these facts.
When you only have one tool in your arsenal, it becomes the solution for all conditions, whether or not it is appropriate. Once a procedure becomes the “standard of care,” it is very difficult to change medical practice. Additionally, the lucrative reimbursement for surgery to health care providers and institutions (especially robot-assisted surgeries) cannot be ignored.
Lack of informed consent is another important factor. Women are rarely informed of alternative treatments or side effects of hysterectomy before undergoing the procedure. Gynecologic surgical consent forms are often open ended, allowing surgeons to remove whatever organs they want even absent pathology. The insistence from gynecological societies that this treatment is appropriate and with minimal risk makes it difficult for women who undergo them to challenge the institutions that perform them.
Also at play are the prevalent myths in medicine (and society more broadly) that the uterus is disposable after childbearing and the ovaries shut down at menopause. These myths stem from the misogynistic idea that women’s primary function is childbearing and their lives are of little value once fertility ends. Additionally, there are prevailing views that women are not supposed to be sexual. Tellingly, the word “hysteria” originates from medical professionals defining a neurotic condition peculiar to women, thought to be caused by uterine dysfunction. Hysterectomy was the cure for this “madness.” I, as well as many other women, can certainly attest to the fact that hysterectomy has a marked effect on personality and emotions, to the point we never feel like ourselves.
We need to emphasize conservative treatment in gynecology, in the same way that “watchful waiting” has become more of the norm in prostate cancer treatment. Gynecology training needs to be overhauled to emphasize alternatives to surgery as well as restorative surgeries (such as myomectomy and cystectomy). Surgical consent forms need to be more specific. Doctors need to end their paternalistic treatment of women and need to honor their oath to “first, do no harm.” And, most importantly, women need to know the short- and long-term benefits and risks of all treatment options well in advance of treatment. The “madness” of unnecessary hysterectomy harms 600,000+ women every year. IT. HAS. TO. STOP!