All Her Health Problems Began With An Elective Hysterectomy

After an unexpected pregnancy (the children she & her husband had planned were already 9, 11 and 13) and uneventful delivery, Janeze's OB-GYN politely suggested that since her child-bearing years were over, why not just "clean everything up" & minimize her risk of reproductive cancers down the road?

And in a world where newborn males' genitals are mutilated before they can even have a say in the matter, where problematic gallbladders, tonsils, adenoids, and appendices are clipped out with nary a second thought, surgically cutting through the muscles (& fascia) of her pelvic floor, severing nerves & blood vessels in the process, and cutting out her uterus, cervix, Fallopian tubes, and, as a sort of grudging admission they lacked any understanding as to how this may ultimately affect her overall physiology (not to mention psychology), only one of her two ovaries, seemed more like an inevitable and fortunate modern day rite of passage than a decision that would cast a dark shadow over the second half of her life.

Intractable insomnia? Check. New onset gloomy outlook & generalized anxiety? Check. Prolapsed colon? Urinary incontinence? IBS-C for life? Check, check, & check. Bone & brain atrophy? Check, check.

A decade or so later, when menopause came on full-bore, she began HRT (a standardized combination of (the now known to be inflammatory rather than protective) estradiol from pregnant horses & synthetic progestins, as was the standard at the time), but her blood E2 & Pg levels were never monitored (nor her urinary estrogen metabolites checked), and when that Women's Health Initiative scare hit in the summer of 2002, both she & her OB-GYN panicked & stopped.

(We now know how grossly misinterpreted this particular sub-study of the WHI was, but controversy (see Avrum Bluming book, see Christiane Northrup), and quite frankly, confusion continue to this day.)

Over the ensuing years, 2003-2006, the downhill neuro-psych spiral gathered steam-- and her family doc's prescription pad came to the rescue: Ambien, Xanax, Sonata, Lunesta.

Two decades later, now in her mid-70's, at her third or fourth attempt to wean off the Z-drugs (she had finally gotten off the benzos two years after burying her husband), an uncharacteristically thorough PCP queried her thoughtfully, "When was the last time you slept well?" he prompted her. She reflected for a moment as an answer bubbled up from deep within her, completely unexpected, almost as if something of a psychotherapeutic breakthrough: "I would say just prior to my hysterectomy, I guess."

When writer (& now activist) Judith G. was coerced into an unnecessary hysterectomy, at age 50, after reporting pelvic pain and discovering a (benign) ovarian cyst, she writes that the effects on not only her mood but her sense of self were "immediate and severe."

"Even though I was 50 years old," she writes on the Lown Institute's web site (read more about Lown here), "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. I became suicidal, which I had never experienced before."

But she didn't stop there. She requested a copy of her medical records (Go, girl!) and was astonished at what she learned.

Her gynecologist had been dishonest about her diagnosis, treatment options, and their risks and benefits. He (yes, a man) invoked fears of ovarian cancer and made vague reference to "a suspicious mass" on the other ovary. The “suspicious mass,” she later learned from notes in her records, had disappeared by the time of surgery; more than likely a normal cycle cyst. As for the uterus itself, there was absolutely nothing wrong with it.

"But let's remove it all anyway, just to be safe."

This happens more than 830,000 times a year in the U.S. That works out to over 2,000 hysterectomies daily (95 an hour, 1.6 a minute). And represents a $25,000,000,000 a year industry. That's billion with a B.

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).

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.

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.

see also: "Toward 'net zero' hysterectomy in Australia (link to 2022 paper)

Excerpt:

Why still such high numbers? Comparisons can be made to other specialities, where ‘overdiagnosis’ and overservicing is now widely recognised to occur when people are labelled with or treated for a disease that would never cause them harm.

The drivers for this include culture, the health system, industry, professionals, and patients and the public. Parallels can also be made in other surgical specialties, with an over-representation of spinal fusion, appendicectomy for a normal appendix, and cholecystectomy for incidental gallstones, which may also be driven by the ‘worried well’, overservicing, and the financial incentive of private sector medicine.

The gynaecologist’s particular practice style is likely to be influenced by his or her limited knowledge, by training, by the views of peers and by the constraints of the healthcare system in which s/he operates.

Note: the genesis of this blog post was the late life realization that just about everything that ruined my family member's last 30 years of life began with her hysterectomy. It is a mashup of sorts of Judith Gerber's cracker jack essay on the Lown Institute site as well as linked content on the Ovaries For Life site. We are grateful to them both.