Hysterectomy and Female Castration: the Enablers Part III
Emory University Hospital, Atlanta, Georgia
This is the third part 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 investigated some of the errors, omissions, and contradictions on the University of Pittsburgh Medical Center’s (UPMC) website. To read Part I (and comments from women around the country) click here. And in Part II we highlighted the seriously deficient online patient education product known as “X-Plain” at Gundersen Lutheran Medical Center in La Crosse, Wisconsin. To read Part II click here.
Part III of this series highlights Emory University Hospital’s website. As you will see, Emory provides little of the basic information that women need in order to make informed decisions about hysterectomy, while directing them to visit other websites that contain gross misinformation that is potentially damaging to women.
This is a frightening trend in hospital websites all over the country. Hospitals and doctors point their patients to some other source of hysterectomy misinformation (such as the Patient Education Institute’s product X-Plain, obgyn.net, or acog.org), thereby washing their hands of accountability for omitting the requisite information for hysterectomy informed consent on their own websites. The stated purpose of these sites is to provide information to women who’ve been told they need the surgery, but they don’t inform them of the consequences that women need to know. Instead of providing correct information, they potentially put women into harm’s way.
“The Emory Department of Gynecology and Obstetrics,” they tell visitors, “is dedicated to providing health information and education to women in the Atlanta community, the region and the nation.” But we couldn’t find any hysterectomy patient education materials on their website that educate women about the consequences of hysterectomy—the most common non-obstetric surgery performed in the United States. The “.edu” suffix on their website URL indicates that Emory is in fact an educational institution, so what better place for them to do so than right on their own hospital website where they make the claim?
The reason we selected Emory, Gundersen, and UPMC as the three hospital websites to be investigated isn’t because they’re the only hospitals providing misinformation and omissions of fact. On the contrary, they were chosen because these three websites are typical of patient education information published on hospital websites throughout the country.
In the top right corner of the Emory University Hospital home page (http://www.emoryhealthcare.org/departments/), click on “SEARCH.” Type in the search term “hysterectomy” and then click on “search now.” You’re taken to a page with a long list of press releases and articles.
The first press release we came to on the list was dated June 2, 2004. It goes into great detail about how “vaginal hysterectomies are more advantageous” than abdominal hysterectomies without any reference to the consequences of removing the female organs. What they don’t mention is that many of the most devastating adverse effects are the same no matter how the uterus is removed. Click here to watch “Female Anatomy: the Functions of the Female Organs” for information that every doctor and hospital should provide to every woman who is told she needs a hysterectomy.
The next link on the list takes visitors to an online article titled Uterine Fibroid Embolization (UFE). Even the title of this article is misleading. First, it’s not the fibroid that’s occluded with embolic material, it’s the uterine artery. It’s convenient for doctors and hospitals to refer to it as UFE, because Uterine Artery Embolization (UAE) alerts and alarms women that something is being injected into the artery—their vascular system. The reason doctors began calling it UFE is to make it sound more benign than UAE. They don’t tell women that the embolic material injected into the uterine artery has been found to migrate to the ovaries, uterus, lungs, and other vital organs. For this reason UAE should be contraindicated for women who want to have children. When the embolic material and/or radiation causes the ovaries to cease to function, it results in a de facto castration.
Second, it’s odd that an article that seems to want to educate women about “What are uterine fibroids?” falls under the title of one of the most dangerous treatment options. Women might expect that the patient education materials of a teaching hospital would label this section “What are fibroids?” with UAE mentioned only as a treatment option with serious potential adverse effects, including death, loss of ovarian function, necrosis (death of the tissue) of the vagina, labia, bladder, bowel, and kidney.
Further obscuring the facts, Emory tells visitors, “Symptomatic uterine fibroids trigger approximately 150,000 hysterectomies each year.” In fact it’s the fear that doctors instill in women regarding benign conditions such as fibroids, along with misinformation about treatment options, that “triggers” hysterectomies. The number of hysterectomies performed for fibroids each year in this country is more like 400,000, but fibroids can’t pull the trigger on hysterectomies. Only doctors can pull that trigger.
Finally, the only reference to hysterectomy in the UAE article is one that uses language reminiscent of the U.S. Army’s recruitment theme—Emory claims that their “goal is to help you to live the best as you can be.” We would no more recommend that you search for all that you can be on an operating table than on a battlefield. The best that you can be is whole and intact, far away from anyone who wants to damage or remove your sex organs.
Emory offers other online articles that focus on endometriosis and gynecological services, but none of them discusses the well-documented consequences of hysterectomy.
Back on the home page, if you click on “Departments” and then scroll down to the bottom right and click on “Gynecology & Obstetrics” under the subheading “Women’s Health Services,” you’re taken to a page titled “Emory Women’s Care.” On this page you’ll find the following ad:
People don’t get paid to donate. It’s not a contribution, it’s a business transaction, and the product is women’s eggs. It’s objectionable to disguise it as such…especially when Emory fails to provide the one thing they claim to make available to women—patient education. Why not simply ask visitors, “Are your eggs for sale? If so, we’d like to buy them. And we’re willing to pay a handsome price because it’s a frightening, painful, and potentially fatal procedure for both you and the woman who your eggs will be later injected into.”
As we said, this investigation into Emory’s website is Part III of a series. What was remarkable about Part I was that the University of Pittsburgh Medical Center (UPMC) website contained glaring contradictions. Although we informed them of numerous anatomical errors on their website, and although UPMC did drop one of their hysterectomy pages to eliminate the most glaring contradictions, they continue to provide potentially damaging information to women. What was remarkable in Part II of the series was the Gundersen-Lutheran Hospital’s patient education tutorial called X-Plain. X-Plain requires women to answer questions falsely in order to proceed through their error-riddled tutorial. They have ignored letters from HERS informing them of their misleading information, but they continue to misinform women with the same potentially damaging information. And now what stands out to us in Part III is that Emory claims to provide information about hysterectomy but actually provides almost none at all. What’s remarkable isn’t the startling misinformation we found on the other two hospital websites, but the extent to which Emory promotes invasive procedures while directing visitors to look elsewhere for facts that they obviously have no intention of providing to women on their own website that gushes with recommendations for surgery.
1. the American College of Obstetricians and Gynecologists
2. the Universe of Women’s Health
3. a phone number at Emory
1. The American College of Obstetricians and Gynecologists’ website (www.acog.org) sounds reliable enough, but what do visitors to Emory’s website find if they follow the link and are redirected there? Researching ACOG’s site for hysterectomy revealed a list of links to printed “educational” materials. The first one is “Understanding Hysterectomy.” It can be purchased from the ACOG website, but the minimum order is 50…with a discount for ACOG members. Click on the link and it takes you to this brief summary:
“Understanding Hysterectomy Description"
"Hysterectomy—removal of the uterus—is a way of treating problems that affect the uterus. Many conditions can be cured with hysterectomy. Because it is major surgery, your doctor may suggest trying other treatments first. For conditions that have not responded to other treatments, a hysterectomy may be the best choice. It depends on the effect of the condition and the surgery on your life. You should be fully informed of all options before you decide."
"This pamphlet explains:
* Reasons for having a hysterectomy
* Ways hysterectomy is performed
* Risks of hysterectomy
* Recovery after surgery”
2. The second option—the Universe of Women's Health—takes visitors to www.obgyn.net. At the bottom of each page of this website you’ll find pro-hysterectomy Google ads. On the “Select a Topic” drop-down menu on OBGYN.net there are three hysterectomy topics. First is the Hysterectomy Resource Center. Here, the pelvic anatomy lesson offered says:
The “Indications” link invites visitors to a page with a video to learn about the different types of hysterectomy. At the bottom of the page visitors are reassured that they’ll be in good company if they have their sex organs removed. They seem determined to make a surgery that is very damaging sound like a walk in the park—nothing to it. There is sometimes safety in numbers, but to suggest that women can feel good about hysterectomy and castration because that’s what OB/GYNs have been promoting to countless other women for years is appalling:
Less invasive? No matter how it’s done, they’re removing female sex organs. There’s nothing non-invasive about it.
They then invite visitors to click on the link “What is a hysterectomy?” where they say:
Whether the ovaries are removed or not shouldn’t depend upon the surgical approach or symptoms. A symptom isn’t a disease. OBGYN.net is a potentially dangerous website that lures women in by holding themselves out as a reliable source, but then they don’t provide the information that women need to make a decision about their own bodies. And once again removal of the ovaries is made to sound as trivial as a doctor’s whim, when in fact the ovaries are the female gonads and their removal is castration, the same as removal of the testicles is castration. The ovaries produce hormones all of a woman’s life. There’s no age or time in any person’s life when the gonads aren’t needed. It’s unconscionable that this website doesn’t mention those vital facts.
There’s also a subheading called “Conditions that may require a hysterectomy.” They then provide a list of “conditions” that should never require a hysterectomy. In fact, a hysterectomy is never required. If it was required that would mean that you have no choice, that it will be done to you whether or not you agree to it. But even if you have cancer it’s your right to say no to surgery. You have the right to refuse consent.
The link to “Patients stories” directs visitors to a blank page. This may be the best link of all, because on OBGYN.net no news about hysterectomy is good news. And the link to “Patient Brochures” has one brochure, and it’s about Laparsocopic Supracervical Hysterectomy. No helpful information there either.
There was no information about the devastating, predictable, lifelong adverse effects of hysterectomy. Many of the links funneled visitors toward the MedlinePlus website. Visit http://hersfoundation.org/docs/Medline-press-release.pdf to read the HERS Foundation’s press release titled “Medline Plus a Minus for Women.” MedlinePlus (a “service” of the National Library of Medicine) also points visitors to X-Plain which, as we have said, is rife with misinformation that is largely unsupported by anatomical fact.
3. The last option for visitors to Emory’s website who are looking for hysterectomy information is their suggestion to “please call” 404-778-7777. So HERS president, Nora W. Coffey did just that. In fact, Nora made three separate calls, during which she took detailed, verbatim notes.
The first call was made on March 20, 2008. A nurse answered the phone, but she seemed confused by simple questions like, “Can a woman have a uterine orgasm without a uterus?” The RN then put Nora on hold for several minutes so she could get some literature on the subject. When she returned, she read Nora the information that she had found on hysterectomy.
As the nurse read the hysterectomy information to Nora, it sounded oddly familiar. Some of the language she was using was uniquely HERS—it was coined at the HERS Foundation. For example, she referred to the uterus as “hormone-responsive” and referred to women who had undergone the surgery as “hysterectomized,” a verbalization of “hysterectomy” that was coined at HERS to describe the fact that women don’t get a hysterectomy the way that they get their nails done—they’re hysterectomized by doctors. Fortunately she spoke haltingly and slowly, so Nora was able to type up every word that the nurse said. This is verbatim from the nurse:
"The uterus is a hormone-responsive reproductive sex organ, and the ovaries produce the majority of estrogen and progesterone that is available in genetic females of reproductive age. According to the National Center for Health Statistics, of the 617,000 hysterectomies performed in 2004, 73% also involved the surgical removal of the ovaries. In the United States, 1/3 of genetic females can be expected to have a hysterectomy by age 60. There are currently an estimate of 22 million people in the United States who have undergone this procedure."
Most of this information is actually correct, but it slowly began to dawn on Nora where the nurse was getting this information from—Wikipedia.
And then, in one of her concluding comments about the impact of hysterectomy on female sexual pleasure, the nurse told Nora verbatim, “But um, uh, it’s always like in a non-medical way that I’ve always heard it’s like taking away the baby carriage but leaving the playpen.”
It’s a common refrain that women have told HERS they’ve been hearing from gynecologists all over the country for more than 50 years—“Don’t worry, I’m going to take out the crib, but I’ll leave the playpen.” In other words, you won’t be able to have children, and you won’t be able to have uterine orgasms, but a pouch will still exist for your husband to insert his penis. Thanks, Emory.
The next day Nora made her second call to the number listed under Emory’s Patient Education banner. Again she spoke with a nurse who Nora asked a few simple questions. And again the nurse seemed confused by Nora’s questions and put her on hold.
When the nurse returned she said, “Thank you for being so patient. I was just talking with Paula my supervisor and there is a certain area that I can go into and mail you information about the hysterectomy.”
“Okay,” Nora said, “but you can’t give me any information?”
“Well, it’s just that there’s so much information on it we really don’t have the time to be talking all about it. You see what I mean? We’d be on the phone for the next hour.”
This was a curious comment for a “health professional” to make, considering the fact that the HERS Foundation developed an anatomy lesson that is the minimum information a woman needs to make an informed decision about hysterectomy…and that video lesson is only 11 minutes and 45 seconds. The nurse then took the mailing address, after which Nora said, “But I’m disappointed that Patient Education can’t give me any information on the phone.”
So Nora repeated her request: “I would like to know what the effects of hysterectomy are.”
Instead of Nora, the caller of course could’ve been any woman faced with the decision of whether or not to have surgery. The fact that the nurse asked Nora what she would like to know is baffling. After all, how does the patient know what they need to know? It’s like a woman asking a doctor, “Would you please tell me what the consequences of hysterectomy are?” and the doctor responding, “Okay, what would you like to know?” What’s obvious from these calls is that women need to know the answers to their questions before they ask them, which renders this Emory’s patient education meaningless at best…and potentially very harmful.
The nurse then repeated herself, saying, “There’s just so much information here,” but she never did talk about the consequences of hysterectomy. The best she could do was to define “abdominal hysterectomy” as a hysterectomy where the uterus is pulled out through the abdomen, and other self-evident information. She then said, “Okay?” as if that was all the information she had for Nora and she was prepared to end the conversation there.
As any woman seeking information from a teaching hospital might, Nora grew frustrated. She said to the nurse, “But we really didn’t talk about the consequences of the surgery!”
The nurse’s response? “Uh hm….”
Undaunted, Nora asked, “Are there any changes…are there any sexual changes…are there any other changes that are pretty common?”
Sure, but she’s a nurse taking calls on a number listed under patient education. So Nora said, “You know I didn’t get very many answers to my questions, which is why I looked on the website to see if you have patient education and this is the number on Emory’s gynecology website page.”
The nurse said only, “Yeah? Can you hold one second please?”
While Nora was on hold, she was subjected to ads for other treatments being advertised by Emory. Like most hospitals, Emory is about making people feel good about the drugs and treatments and surgeries they offer.
Finally the nurse returned. She explained to Nora that all women are unique, so she should talk with her doctor. Amazed that this final option on Emory’s website turned out to also be a dead end, Nora asked why, if they don’t have any information, Emory provides this number for Patient Education?
“Well,” the nurse said, “I do have information here that I’m going to mail off to you.”
About a week later Nora called the HealthcareConnection again.
The person who answered said, “Thanks for calling Emory HealthcareConnection, this is Helen, how may I help you?”
“Hi,” Nora said, “is this your patient education department?”
“Yeah…no…this is actually a doctor referral line?”
Now this was an interesting development—Nora had called twice before and was told that she had called the Patient Education number and that it was staffed by nurses. In each of those calls a nurse struggled to answer Nora’s questions, and now a week later this?
“Okay,” Nora said, “so are you aware that on the Gynecology and Obstetrics website for Emory they give this number for Patient Education?”
Nora was very soon placed on hold again. While on hold Nora listened to an ad for a free educational seminar on the effective non-surgical treatment of uterine fibroids. In other words, it’s a free opportunity for women to be told about the profitable treatment known as UAE, but none of the patient education options available to women would even mention the adverse effects of any of these treatments that have been well-documented in medical literature.
In the first two calls the nurses acknowledged that they knew that they were answering a Patient Education phone line, but now when this nurse returned to the phone she told Nora, “Well, see, we do a lot of the seminars as far as registering people who want to attend the seminars at Emory.” Then she said that health information isn’t really what they do, but, “We have information in our database where we can pull up the health library and under MedlinePlus…we can type in hysterectomies, but if women want printed information,” she said, “you know it would have to be printed off of there… Well, I mean that’s all we have to offer, apparently.” She then elaborated to say, “We’re actually under marketing… The department I’m with is the Emory HealthConnection.”
We are well aware of the fact that they heavily market their surgeries and procedures, but but Emory’s website says:
"Emory HealthConnection serves as your vehicle to access the world of knowledge and expert care encompassed within the many components of EMORY HEALTHCARE. The Emory HealthConnection staff includes registered nurses and consultation representatives who have a library of information at their fingertips and can provide you with the latest information on the services provided by EMORY HEALTHCARE."
A “world of knowledge,” they claim? The worldwide web, maybe, but you don’t need Emory’s help to wander around that endless landmine of misinformation. “Library of information,” they say? Their nurses and patient education materials couldn’t answer one simple question from Nora.
If you have undergone a hysterectomy at Emory or their affiliated hospitals after relying on information from X-Plain, contact HERS at firstname.lastname@example.org.