Gundersen Lutheran Medical Center, La Crosse, Wisconsin
Part I of this series was posted on January 1, 2008. Regarding the information below, HERS acknowledges that on or before February 6, 2008 UPMC deactivated the link to the “Hysterectomy” and “Preparing for a Hysterectomy” sections of their Patient Education Materials, thereby eliminating contradictions with the “Hysterectomy” section of their Procedures materials, which remains active.
This is the second in a series of Posts to highlight omissions of fact and misinformation about hysterectomy currently being provided to women on hospital, doctor, and medical school websites. In Part I of this series we demonstrated that the degree of accuracy of the information that women receive about hysterectomy from the University of Pittsburgh Medical Center (UPMC) depends in part on how women search their website. To read Part I (and the 176 comments from women around the country) click here.
Part II of this series highlights the Gundersen Lutheran Medical Center’s seriously deficient patient education product known as X-Plain. As you will see, much of the information provided by X-Plain isn’t supported by anatomical fact or what women experience after hysterectomy.
The reason that we’ve selected Gundersen and UPMC as the first hospital websites to be investigated isn’t because they’re the only hospitals providing misinformation. They were chosen because they’re both typical of patient education information published on hospital websites throughout the country.
Point your web browser to http://gundluth.org/. Click on “Health Information,” then “Interactive Patient Education.” Next, scroll down to “Hysterectomy.” Note that the first screen that you come to defines this tutorial as a “lesson.” Click on “Run Module” and follow the instructions.
The next screen that you come to under the Gundersen Lutheran Medical Center banner says, “Welcome to X-Plain,” which is defined as, “A series of health education programs published by the Patient Education Institute—the leading provider of interactive computer based health education!” According to the Patient Education Institute’s website, this lesson in health education is becoming the “standard of care” in the medical industry. The Patient Education Institute claims that this information will help hospitals like Gundersen to:
• “manage malpractice risk”
• “document patient education and informed consent,” which can be linked “to the patient ID”
• “saves staff 15 minutes per patient”
• and, “if needed, this completion data can be saved to your EMR” (electronic medical record) and used in “legal proceedings” to “counter any claims”
After the welcome page you’re then told, “For questions or problems with this module, please contact Gundersen Lutheran at 608-775-5441 or 1-800-362-9567, Extension 55441.”
Proceeding through the lesson, in the section titled “Anatomy,” the tutorial tells patients, “Menopause occurs when the ovaries quit producing hormones and releasing eggs.” However, this information incorrect. The ovaries continue to produce hormones after menopause. In fact, they continue to produce hormones all of a woman’s life.
Later we’re told that the cervix “opens in the vagina, which in turn opens to the outside…” This is confusing information to say the least. In fact, the uterus is continuous with the cervix, which is continuous with the vagina, and the cervix is the part of the uterus that is at the top of the vagina. The cervix is the opening to the uterus. The phrase “which in turn opens to the outside” makes no sense.
In the section titled “Treatment Options” patients are told that “fibroid tumors may shrink after menopause without the presence of estrogen.” While it is true that fibroids typically shrink at menopause, the rest of Gundersen’s statement is untrue because the ovaries continue to produce hormones—including estrogens—all of a woman’s life.
As it is with both UPMC and Gundersen, one of the most consistent potentially damaging omissions on the websites of America’s hospitals is the failure to inform the public that the uterus is a sex organ. And one of the most consistent false statements made on hospital websites is that sex will be the same or better after hysterectomy. If hospitals and doctors did inform women that the uterus is a sex organ, then women would immediately know that removing the uterus results in sexual loss. So when Gundersen claims that “your health” is their “passion” but then says in this patient education lesson that “hysterectomy does not affect sexual sensations,” what are we to conclude? This statement is false. It’s untrue.
The removal of sex organs certainly affects uterine orgasm, because uterine orgasm isn’t possible without a uterus. Furthermore, Gundersen claims, “Sexual activity can be resumed within weeks and can be as pleasurable as it was before the operation.” What they don’t mention is that the vagina is shortened during hysterectomy, it is made into a closed pocket, and it is sutured shut at the top when the uterus is removed. Most women don’t consider a shortened vagina, scar tissue at the top of the vagina, a loss of vaginal elasticity, loss of uterine orgasm, and diminished or lost physical sensation in the vagina and external genitalia to result in a sexual experience that is as pleasurable after the surgery as it was before the operation.
The reason that this information must be provided to women is that the functions of the female sex organs aren’t visible the way that the functions of the male sex organs are visible. In other words, the functions of the female organs aren’t self-evident the way that the functions of the male organs are self-evident. In telling women information about the uterus that is unsupported by anatomical fact, not only is Gundersen not informing women of the information that they need in order to make an informed decision, women are potentially misinformed. Gundersen has supplied a patient education lesson that omits the very information that women need to decide what they and will not allow to be done to their bodies.
In the section titled “Procedure” Gundersen goes on to tell patients, “The aim of the surgery is to take the uterus out. Sometimes the surgeon may decide to also take one or both ovaries out along with the fallopian tubes.” The message here is that clearly the doctor’s “aim” may also be to remove the female gonads as well. And if you acknowledge that you have completed the X-Plain tutorial, then in a court of law it can be demonstrated that you were informed that the surgeon may also castrate you without further discussion.
Gundersen fails to use clearly understood and informative language. The medically correct word for removal of the ovaries (the female gonads) is castration. The National Institutes of Health reports that about 75% of hysterectomized women are castrated at the time of the surgery, although the incidence of cancer in the ovaries and the testicles is nearly identical, at only .01% of the population. Gundersen then reinforces the fact that the doctor may decide to remove your ovaries when they say, “After the pelvis is entered, the uterus is taken out. The surgeon may also decide to take out the ovaries and fallopian tubes.” In other words, let the reader beware—you have now been informed. Without any further discussion, the surgeon (not you) “may also decide” to castrate you, and if you acknowledge watching this tutorial then you have consented to castration even if the doctor, nurse, and anesthesiologist verbally tell you that they won’t.
In the section titled “Risks and Complications” patients are told, “This procedure is very safe. There are however, several possible risks and complications. These are very unlikely, but possible. You need to know about them just in case they happen.” Again, these are strange and potentially damaging statements. While we always appreciate simple language that is easily understood, much of X-Plain’s language is vague, imprecise, and not supported by anatomical fact. It either doesn’t mean what it says, or it doesn’t say what it means. According to S. S. Meltomaa et al in their study “Incidence, risk factors and outcome of infection in a 1-year hysterectomy cohort: a prospective follow-up study,” which has been widely published since 2000 in the Journal of Hospital Infection and in the Journal of the American Association of Gynecologic Laparoscopists to name a few, “Infection is a common complication of abdominal and vaginal hysterectomy and may lead to prolonged hospital stay.” In the study, 19.2% of hysterectomy patients (one out of five) developed hospital-acquired infections.
One of the things that makes this hysterectomy “lesson” so potentially damaging is the fact that women who take part in it are periodically required to answer true/false or yes/no questions. If you don’t answer right away, a voice insists, “Please answer the question.” In order for you to proceed through the tutorial, you must provide the required answer, or the software program won’t advance the screen forward to the next section. If you answer incorrectly, you’ll be asked the question again and again until you get it “right.” This would all be well and good if their answers were correct and supported by anatomical fact…but some are not.
For example, X-Plain asks patients to answer the question, “Are heart attacks and other anesthesia related complications common during and after this operation?” The correct response to this question would be “yes,” because hysterectomized women have a three times greater incidence of myocardial infarction than non-hysterectomized women, and if their ovaries are also removed women have a seven times greater incidence of myocardial infarction. And precise estimates of anesthesia complications are difficult to come by, but about 1/10 women experience minor complications like bruising and headache; about 1/1,000 experience much more severe complications like lung infection or damage to the teeth, lips, or tongue; and about 1/10,000 will experience very severe complications ranging from impaired vision to death. But in order for patients to proceed through the tutorial they must give the “no” answer to this question. After patients answer the question falsely, that false answer is then reinforced by a pop-up dialogue box that repeats the false information. In a court of law, the fact that you have proceeded through the tutorial means that you must’ve answered their question as required, which could be construed as agreement. Documentation of your responses could then become the hospital’s protection to “counter any claims” that you might bring against them.
Next Gundersen asks patients, “Are infections very common after surgery?” As we have demonstrated and medical literature has made quite clear, the correct answer is “yes.” Infections are indeed common after surgery. But again, the patient must answer “no” in order to continue, thereby requiring women to agree with a false statement.
After repeatedly requiring patients to either end the tutorial or answer some of their confusing questions wrongly, Gundersen continues with more information that is unsupported by anatomical fact. They say, “Rarely, structures in the pelvis and abdomen can be injured during the surgery… It is very rare for the tubes connecting the kidneys to the bladder as well as the bladder itself to be injured.” Again, this is untrue. In a report presented at the American Urogynecologic Society / Society of Gynecologic Surgeons Joint Scientific Meeting, Barak Vakili, MD said, “The overall incidence of intraoperative injury is 5.1%, with the risk increased when patients undergo concomitant surgery for prolapse or incontinence.” With damage to the urinary tract occurring in more than one out of every 20 women undergoing hysterectomy, it’s not a rare occurrence. In fact it’s quite common. It occurs more than 31,000 times each year during hysterectomies performed in this country. In a more recent study published in the October 27, 2007 issue of The Lancet, Dr. Daniel Altman et al said that hysterectomized women “had a more than doubled risk increase for subsequent stress-urinary-incontinence surgery.”
Gundersen then goes on to say, “In extremely rare situations, the intestines and the blood vessels could also be affected, necessitating another operation.” Information that is supposed to inform women about the consequences of a major operation should be very clear, but this statement is too unclear to understand what it is that they’re trying to say. Are they referring to the blood vessels of the intestines? If so, then yes, it would be very damaging to lose blood supply to the intestines, which is rare. But if they’re referring to the rich blood supply attached to the uterus, those blood vessels are always permanently damaged during hysterectomy because the blood supply to the uterus that radiates throughout the pelvis must be severed to remove the uterus. Severing this vascular supply affects the flow of blood to distant organs and limbs, including the intestines. If X-Plain is discussing the vessels of the intestines, then the fact that they neglect to discuss the vessels of the uterus (the organ that is removed during hysterectomy, which is the topic of this lesson) is a blatant omission.
“Similarly,” Gundersen claims, “in extremely rare situations, small nerves in the pelvis may be injured resulting in decreased sensation in the sexual organs. Rarely, this can lead to sexual dysfunction.” What sex organs are they referring to? The ones that were removed? This is potentially a very damaging statement because, in fact, all of the nerves that attach to the uterus must be severed to remove it. Those nerves radiate throughout the pelvis, and supply enervation (feeling) to the nipples, clitoris, vagina, and elsewhere. But they obviously no longer serve that function after they’ve been severed to remove the uterus. What Gundersen refers to as “extremely rare” actually occurs in every hysterectomy. The uterus can’t be removed without severing those nerves, and they can’t be reattached. Furthermore, uterine orgasm can’t occur without a uterus. So, in fact, some or all of a woman’s sexual function is permanently lost, resulting in “sexual dysfunction” in every hysterectomized woman.
And now Gundersen’s patients are apparently ready for another quiz: True or false? “After a hysterectomy sexual pleasure is decreased.” Clearly, the correct answer is “true.” But once again, in order to proceed women must provide the false, incorrect answer that is unsupported by anatomical fact. And when patients provide the false answer, Gundersen reinforces that false statement by telling patients, “Correct. Women whose conditions caused pain during sexual intercourse, report a more enjoyable intercourse.” As we have said, most women don’t consider shortening the vagina, a loss of vaginal elasticity, loss of uterine orgasm, and diminished or lost physical sensation in the vagina and external genitalia to result in a sexual experience that is as pleasurable after the surgery as it was before the operation.
Later, women are asked another true/false question. “One of the side effects of a hysterectomy is weight gain.” True or false? The fact is, women who contact the HERS Foundation report that although their diet and exercise remain the same, on average they experience weight gain of 25 pounds or more in the first year after surgery. But Gundersen patients are required once again to answer this question falsely if they want to continue with the lesson.
In the section “After the Surgery” patients are told, “You can resume your sexual activities within six weeks. This operation will not change your sexual lifestyle or sensations.” Let’s be very clear here: The only way that the removal of sex organs won’t change your sexual lifestyle or sensations is if you never experienced them to begin with. In fact, it will always change your sexual lifestyle and sensations, because it will eliminate the possibility of uterine orgasm and some or all of your sexual feeling forever.
Gundersen’s hysterectomy lesson continues by saying, “Most likely, the operation will free you from the chronic pain caused by the uterine problem.” Once again, Gundersen and the makers of X-Plain appear to be unfamiliar with medical research and anatomical fact. Thomas Stovall, MD et al said in the journal Obstetrics & Gynecology, “Despite preoperative history and physical findings suggesting and histologic findings confirming uterine disease, nearly a quarter of the patients have persistent pelvic pain after hysterectomy for chronic pelvic pain. These findings should have a significant impact on the therapeutic choices recommended by gynecologists and may alter the informed consent that patients give in such cases.” Based on what women report to HERS, chronic pain is much more common after hysterectomy than even this report suggests.
In conclusion, Gundersen tells patients, “Hysterectomy is a very safe and successful operation. It can be a positive solution for many serious conditions affecting female reproductive organs and causing pain and bleeding.” And with that, Gundersen completes its tutorial on hysterectomy without addressing the well-documented consequences of this life-altering surgery. In fact, Gundersen might have mentioned, hysterectomy is widely considered to be the most over-utilized and medically unwarranted surgery in America. It is rarely used to treat actual medical problems that have no conservative treatment options, and the vast majority of hysterectomies are recommended and performed for benign conditions.
The mortality rate for hysterectomy is approximately nineteen out of every ten thousand women. In the last decade there were an average of 621,000 hysterectomies performed each year in this country, so about 3.25 women continue to die every day of every year in hysterectomy operating rooms or in the immediate post-operative period…almost 1,200 women each year. But the damage caused by removing the uterus and severing the nerves, blood supply, and ligaments that attach to it occurs in all women who undergo hysterectomy.
Hysterectomy represents more than $17B/year in revenue to America’s hospitals. Its aftermath is well-documented and available on the HERS Foundation website. Be your own judge, but what does “relatively safe” mean? It isn’t ever “relatively safe” for the woman whose body is cut into and whose sex organs are removed.
As a patient education tool, it would be far more informative and precise for Gundersen to say that hysterectomy is a dangerous operation that causes serious, permanent anatomical and physiological destruction and life altering changes. The surgery itself causes permanent pain, permanent sexual loss, and a host of medical problems that women who remain intact don’t experience.
Let the reader beware. Before you make any decision about female surgery watch the 12-minute video “Female Anatomy: the Functions of the Female Organs” at https://www.hersfoundation.org/resources/female-anatomy/.
Email HERS at firstname.lastname@example.org if you know of a doctor, medical school, or hospital website that you think should be highlighted on this blog. If you would like to talk with women about the consequences of hysterectomy, HERS provides a network of women who will talk with you about their experiences.
If you have undergone a hysterectomy at Gundersen or their affiliated hospitals after relying on information from X-Plain, contact HERS at email@example.com.