Saturday, September 26, 2009

Twenty-two Million Strong

There have been several recent comments on HERS blog arguing for financial compensation, or reparations, from the government for the damage caused by hysterectomy and castration.

Reparations do not become a consideration until the public at large acknowledges that harm was done to a select group of people, and the acts that caused harm are stopped. That group and their supporters, then form a coalition to press for compensation from governments that either participated in the wrong doing that caused harm, or failed to stop it.

Let’s pull together to educate the public about the damage caused by hysterectomy, and to support passage of a law that will compel doctors to provide HERS video, “Female Anatomy: the Functions of the Female Organs”, to every woman before she is told to sign a form consenting to hysterectomy or castration. HERS video is a powerful educational tool that has been viewed by close to a million people. Women scheduled for hysterectomies who watch the video cancel their surgeries and when they are told they need the surgery but doctors have not informed them of the information in HERS video, many fire the doctor and walk out.

Everyone’s voice and point of view is important and deserves to be heard. It’s imperative that our common cause brings us together in a positive way to accomplish our common goal of stopping hysterectomy and castration from being performed on women who have not been given the information requisite to informed consent. Please tell us what you think needs to be done, offer wise insightful criticism, and what you are prepared to do to help expedite changing the law. Email HERS at hersfdn@earthlink.net and tell us how you want to be involved in educating the public and supporting legislation. Tell us what you can and want to do:

  • Write letters to the editor of your local and syndicated newspapers
  • Call talk show hosts or their producers to tell them about the issues and the recently published book THE H WORD
  • Ask them to interview Rick Schweikert and Nora W. Coffey
  • Use Facebook and Twitter to tell people to watch the video and read the book
  • Hand out HERS Hysterectomy Pamphlet to people on the street and put them in the waiting rooms of doctor's offices and hospital's waiting rooms
  • Get people to sign the petition
  • Send THE H WORD to friends and family
  • Let HERS know when you have sent THE H WORD to gynecologists so that we can add their name to the growing list on HERS website of doctors who can never again say "I didn't know."

Donate whatever you can to help HERS with the challenging, time intensive, hard work required to change the law, and encourage others to support the growing movement to change the law. It requires dedication, commitment, and perseverance, and the funds to pay for printing, postage, travel to meet with legislators, research, writing, continuous updating of the website and blog, and more.

There are 22 million living women in the U.S. who have been hysterectomized, and 73% of them were castrated. We have all been hurt- primarily women who have been hysterectomized, and by extension their family and friends. Though many women have supportive family and friends, others do not. Each woman lives alone with the far reaching consequences of the surgery, coping the best she can, struggling with problems others have difficulty comprehending. Although each woman is alone in a profound way as she tries to find strategies to cope with a plethora of unsolvable hysterectomy caused problems, collectively we are powerful, 22 million strong. Hand in hand we can circle our legislators, and demand our government work with us and for us, and by working together we can accomplish our common goal of stopping this from being done to the next generation of women and girls.

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18 Comments:

At September 28, 2009 at 10:56 AM , Anonymous Anonymous said...

This article cannot stress enough the importance of ending unconsented hysterectomy by educating the public at large the consequences identified by the medical community and experienced by women. The educational model presented by HERS will assist women in escaping the current practice and strategies to override consent. I have and will continue to put my support behind HERS in their various activities to bring this most devastating practice to an end.
TQ

 
At September 28, 2009 at 1:38 PM , Anonymous Anonymous said...

I too will continue my activism to end unconsented hysterectomies. I've been busy writing the media, writing my Congressmen/women, putting HERS bookmarks in magazines, mailing the H Word, mailing the DVD.

I've also rated my surgeon on every possible website I could find including doctor rating websites (e.g., ratemds, vitals, vimo, healthgrades, mydochub, healthcarereviews, doctorscorecard) and business search engines (e.g., yellowpages, insiderpages, citysearch, local, yelp). For those that have a title, I included CASTRATED in the title. I rated the listings for his name as well as those for his practice.

 
At October 6, 2009 at 4:19 PM , Anonymous Anonymous said...

First, I've got to say that I love this article and that I love the first two posts. "Educational model" and "activism" alike are words of inspiration in this ongoing and uphill battle. Yes, we are the ones armed with mere "slings and arrows" against the mighty medico fortress of establishment. An establishment that willfully and knowingly continues to maim us-- unchecked and unnecessarily for but power, or, profit, or teaching -or whatever.
Yet, it is the medicos who are outnumbered. Yet, it is the medicos whom anatomy and medical science fails. HERS is right: We, have only to "educate to eradicate" these unnecessary, destructive surgeries.
I try to post whenever I can. I try to get everyday Joe and Josephine to see the gender prejudice evident in such huge National and regional numbers of hysterectomized and castrated women. Let me tell you, "Joe" gets it quickly enough when you ask him if men should ever lose their organs over benign growths that could be treated conservatively.
I find that it helps to explain the revenue streams between gyns, hospitals, big pharma- and even the media. People need to know why they haven't heard this before.
Is it embarrassing to share about my own hysterectomy and castration? Of course, but, here's the thing. If I don't speak up and then someone winds up like me...I'd feel partly to blame. That is something that I will not have on my conscience.
Speaking of conscience, there are a couple of medicos that I'd like to have a copy of "The H Word". Medicos whose names I would see added to HERS' list. That is the best idea that I have heard in a long, long time! BC

 
At October 7, 2009 at 10:54 PM , Anonymous Mad as Hell said...

Having written to many media outlets (including More) about hysterectomy without any outwardly obvious results, I was encouraged the other day when I came across an article in the Dec 08/Jan 09 issue of More magazine. Its titled “The Endangered Uterus.”

It states that 90% of hysterectomies are done for reasons other than cancer. It states that this high rate is due to doctors not informing patients of the adverse effects nor of alternative treatments. It specifically lists incontinence, lack of sex drive, increased risk of osteoporosis and heart disease and possibility of a shortened life span. It also mentions the fact that women aren’t open about the effects and even let on that it was a good decision for them.

It pointed out that the ovaries continue to produce hormones for decades after menopause. These are important for overall health as well as for sex drive, energy and lean body mass. It cited the latest study from 2005 about the importance of the ovaries.

It listed alternative treatments such as myomectomy, laparoscopy for endometriosis, pessaries for prolapse, Uterine Artery Embolization (UAE) (which we know is dangerous) and endometrial ablation. The benefits and risks of each procedure were not listed except that the latter two mentioned the possibility that bleeding may return.

It then states that with these alternatives, it’s appalling that there are about 600,000 hysterectomies annually in the U.S. And that 70% are performed via open abdominal surgery due to various factors (e.g., experience, time, risk). It then goes on to talk about how laparoscopic hysterectomy is better – less pain, less scarring and less risk of infection.

WHAT????

A hysterectomy is a hysterectomy is a hysterectomy! It does NOT matter how it’s done. The end result is the SAME. Hysterectomy is a permanently damaging surgery – PERIOD!!!

In spite of this BIG shortcoming, it did then continue to provide some useful information, much more than any other magazine’s article on hysterectomy. It pointed out some of the problems such as difficulty finding a doctor willing and skilled in organ-sparing procedures, in-network doctors that have these skills and insurance reimbursement rates. It even mentioned the benefit of looking beyond your community for other opinions since doctors are often hesitant to disagree with their peers. Also mentioned was seeking on-line opinions from a reputable source. It provided some resources to find alternative treatments; however, HERS was not listed. (I’m sure I mentioned HERS in my correspondence with them.)

It stated that women’s health activists have fought for informed consent legislation. However, despite having hysterectomy informed consent legislation in CA, NY and TX, it cited that these laws are a joke as they’re currently written and enforced.

More magazine actually called these states’ medical boards and they were not even aware that this law existed. (I wonder – are they not aware or just not admitting that they are??)

It also cited one woman’s story which involved removal of a dermoid cyst. Her ob/gyn recommended abdominal surgery to remove the ovary. Dr. William Parker said he would remove only the cyst laparoscopically. Since he doesn’t accept insurance, she had to fight Blue Cross. With the help of Dr. Parker, she took her case to the CA Dept. of Managed Health Care. She had to pay up-front but was reimbursed 100%. And Blue Cross was fined $85,000 for trying to make her undergo abdominal surgery with removal of the ovary.

In spite of its shortcomings, I applaud More Magazine for this article. Although it’s been 10 months since it was published, I may write to them about its shortcomings.

I also applaud Dr. William Parker for his conservative treatment of women and his willingness to speak out against the practice of hysterectomy and ovary removal for benign conditions.

 
At October 11, 2009 at 2:55 PM , Anonymous TQ said...

22 million strong.....

22 million strong.....

22 million strong.....

Let that number really sink in and then ask yourself -"is this really about health care". If that were true, it would mean we have some kind of epidemic occurring.

Otherwise we have some intellectual dishonesty that then plays out as denial of the connection between uterine function and health, unconsented (forced) hysterectomy, and the permanent damaging of women to the tune of 22 million today.

I don't know how anything can be more imperative than coming together, taking action and ending this nightmare today.
TQ

 
At October 11, 2009 at 2:57 PM , Anonymous Mad as Hell said...

"It stated that women’s health activists have fought for informed consent legislation. However, despite having hysterectomy informed consent legislation in CA, NY and TX, it cited that these laws are a joke as they’re currently written and enforced."

I'm all for a law to require that the female anatomy DVD be provided to every woman who's told she needs pelvic surgery. However, since existing hysterectomy consent laws aren't being enforced, is there any reason to believe a new law will be?

Would it help to send "The H Word" and maybe some other info to some of the big multi-state law firms? If we could generate some big lawsuits (especially against hospitals), that would be a big deterrent.

How about sending "The H Word" to the clinical policy department of medical insurance companies?

We could also send it to the states' attorney generals? In any other industry, this would be considered a scam.

Of course, education of the public will make the most impact. So, get out there and spread the word.

We are 22 million STRONG!

 
At October 11, 2009 at 3:11 PM , Blogger HERS Foundation said...

Mad as Hell,

That's a great idea, send the book to all of them. You can buy it on Amazon or from HERS, and they will send it to the recipient you designate.

And remember to let HERS know when you send the book to gynecologists so that we can add their names to the list of doctors who can never again say "I didn't know".

 
At October 11, 2009 at 10:15 PM , Anonymous Elizabeth said...

I only wish I had seen the HERS DVD and read "The H Word" before I consented to a hysterectomy and castration. When I lodged my omplaint against the doctor who performed my hysterectomy and castration, I was told by other so called "health proffessionals", "You don't need a uterus" and "Surely you must be happy that you don't have periods anymore" My complaint was ultimately dismissed with the independent expert (another ob-gyn and ready pratictioner of hysterectomy and castration) concluding that most other doctors would have done the same thing in my case. I didn't have cancer just benign fibroids. I now suffer a range of adverse effects including rapid weight gain, loss of libido, shortened vagina and bladder incontinence. Keep up the good work Nora. Regards, Charmaine

See the extract below from a Forbes Magazine article "Is elective surgery overdone?"

The Expendable Uterus
The quintessential example of an overused operation is hysterectomy, or removal of the uterus. While hysterectomy can be lifesaving for women with cancer, most patients get it for quality-of-life problems, such as pain or bleeding caused by benign fibroids. Studies have long found the operation is often performed on women who don't need it. Yet hysterectomy rates remain stubbornly high, with 650,000 done every year. "The quality of care women get around hysterectomy has been really poor in this country for 50 years," says gynecologist Michael Broder, who has studied hysterectomy overuse.

He and a Rand research team surveyed almost 500 women who had undergone hysterectomies at several California managed care organizations. They found that 70% of the surgeries had been done without first conducting adequate diagnostic tests to ensure the surgery was appropriate. Some 14% of the women shouldn't have gotten a hysterectomy under any circumstances; 21% of 340 patients with fibroids had surgery without first trying drugs or other treatments that might have curbed their symptoms. "The medical establishment puts no value on having a uterus if a woman is no longer having babies," Broder says.

 
At October 12, 2009 at 7:22 PM , Anonymous Mad as Hell said...

While reviewing my medical records, I noticed that my primary care physician was notified of my impending hysterectomy(although no mention was made of the intended ovary removal).

Since this should be standard procedure, maybe we should send The H Word to primary care physicians. Although it seems like they should know the adverse effects after treating so many of us, it appears that their knowledge is sorely lacking. Some of those that are more knowledgeable probably don't want to admit it. So we need to "put it in front of them."

We can then hope that they'll take action as does The H Word reviewer Dr. Eisenstein with his patients for whom a hysterectomy has been recommended. Or better yet, these family physicians can inform women (plant the seed) early on instead of waiting until the day that they're told they "need" a hysterectomy.

 
At October 13, 2009 at 2:32 PM , Anonymous Anonymous said...

I wish I would've read this before I let the Dr. butcher me.

 
At October 13, 2009 at 2:49 PM , Blogger HERS Foundation said...

NOTE: IF YOU WANT TO COMMENT ANONYMOUSLY, AFTER WRITING YOUR COMMENT, PLEASE CHOOSE AN ALIAS FOR ALL OF YOUR COMMENTS SO THAT WE KNOW WHOSE VOICE IS SPEAKING.

 
At November 8, 2009 at 1:48 PM , Anonymous TQ said...

From my many experiences with various doctors, I can definitely say that once a hysterectomy is complete, doctors can say, do, diagnose, prescribe whatever they like. There is nothing to stop them from recommending or demanding with no reasonable rationale. Afterall, they have just performed a surgery that could never lead to health, only to a tourtous demise. The imperativeness of uncovering this slight of hand to the public can only be measured in the number of lives taken. Below are a few of the experiences I have had since surgery:

1) The surgeon who performed the hysterectomy against my wishes, post-op told me that maybe my center of gravity had changed and was causing my "severe" back pain that I had never experienced before surgery. As some preganant women experience back pain and she knows people who make a sudden turn and throw out their back all of a sudden. I wondered is any of this more likely given that I just had major pelvic surgery, or would the surgery be the likely cause?? She also told me that she had never heard of anyone having the issues I was having post-op.

2) After making an appt. with a NP in order to have someone local to order tests from an out-of-town doctor, she wanted me to take a CA-125 test. This test is normally done to check for ovarian cancer. When I delayed taking the test because I had had an accident (as mentioned the one time I was in her office) and was in recovery and PT, I was dealing with worker's comp and my employer as the accident occurred on the job, and the testing from the out-of-town doctor required five weeks of weekly testing - I just didn't have any resources to take yet another test from someone who wasn't my treating physician.
I questioned her on the necessity of the test and she took offense, I eventually took the test which came back negative and she promptly made it clear that I needed to seek treatment elsewhere. The problem though, is that I wasn't seeking treament from her in the first place and had only been to her office once - the initial visit to order the lab tests requested by an out-of-town doctor???

3) After going through the details of my condition, one of the questions asked by the Dr. was whether or not I was having sex - for the first time, I lied and said "yes". He then proceeded to recommend his prescriptions.

4) As I walked into the Dr.'s office, before I had a chance to say hello or sit down; he commented - "You know I believe people should work". I thought, I don't know if he believed women shouldn't be butchered, maimed and disabled to the tune of 600,000+ annually as he made no comment to that effect. He told me I needed to get serious with treating my condition (what condition - removed reproductive organs?) and wanted to prescribe medicines that would force my body to retain sodium and elevate my blood pressure. Not sure whom in their right mind would want these effects created and consider that health treatment.

5) One NP after hearing my list of issues, commented "you look fine" and then proceeded to inform me that I needed to take a mammogram. I remarked, "why, don't I look fine?". She proceeded to request that I fill out some survey which was suppose to determine whether or not I was depressed. Not sure how it was designed to do that. While I didn't think about depression before surgery; post-op it became clear that depression had more to do with whether or not one still had their will, but even that wasn't complete as one's will could be taken after being beaten down enough. But definitely if one still had their will and wanted their life, but could not actualize it, because in my case I no longer had control over my body - that could not be classified as depression.

If you really pay attention to the great work on this site and the information provided by women on this blog, you will see that nothing ends with hysterectomy, except your life, as you knew it.

 
At November 10, 2009 at 10:51 AM , Anonymous Robin said...

My hysterectomy and castration changed who I am.
When a woman is raped often she will begin to hate her body and turn to self destructive ways to deal with what has happened to her. Society in general is often unkind to women but when something traumatic happens (even if it started out as something you thought you were prepared for but were not well informed about or turned out differently than what you thought would happen) its hard not to blame oneself when everyone is telling you to get over it or move on, that your problems are all in your head or you asked for it.

After my hysterectomy I felt an utter loss of control over my 33 year old surgically menopausal body and what was/is happening to it. I sought out many many types of doctors including naturopaths trying to find solutions. In the end I became sick with anorexia nervosa..another unconcious way of trying to find control over my life and body again. I have been in and out of treatments and because insurance wont cover much of my treatment I owe over $10,000 out of pocket. I am very very sick and dying (kidney malfunction, heart problems, very low bmi etc.). I also have severe osteoporosis that was discovered during a routine dexa scan (after hyst but before anorexia set it). For me the trauma of losing a huge part of myself and the loss of important endocrine function set off a domino of problems including mental health issues which arent talked about much as being connected with hysterectomy and/or ovary removal but are very common. I work in medical records dealing with psych charts and trust me there is a huge connection too often overlooked.
People roll their eyes at me when I talk about how similar this is to rape for me, but its worse because I signed a consent form uninformed unbeknownst to me...therefore guilty...and an important part of me (more than a sex and child making machine) is gone forever. Had I had confirmed cancer it might not have been so hard and I could learn to live with it but I had/have a disease...endometriosis...that could have been treated many other ways first which I was refused and which did not "cure" me after losing my organs. It wasnt a life or death situation that needed such drastic measures taken but now my situation is getting there in huge part because of what I allowed to happen to me.
Please please take your time and do everything you can to be informed before trusting a doctor to remove your organs. consider the "horror" stories as well as the "best thing that ever happened" stories. When you hear these stories, consider lenght of time since their surgery, any health problems they are experiencing, and how their lives have really improved or gotten worse. Never take anything at face value. Research research research.

 
At November 11, 2009 at 7:57 PM , Anonymous Mad as Hell said...

Robin,

I'm sorry you're dealing with such horrific problems! Yes, it does feel like rape hence the title of a book "The Ultimate Rape: What Every Woman Should Know about Hysterectomies and Ovarian Removal" by Elizabeth Plourde. But sadly for us, there's no real recovery since our bodies have been irreparably damaged.

Please don't believe that you allowed this to happen to you. A doctor that should have had your best interests at heart instead chose to intentionally harm you for his financial gain. Period!

I beat myself up for a long time because I didn't listen to my intuition. Why? Because I couldn't "wrap my brain" around my doctor unnecessarily removing organs and that an oncologist would enable him. I still have those thoughts to some degree but try not to go there. I now am well aware of the dark side of medicine and will never ever totally trust an M.D. again!

 
At January 8, 2010 at 12:17 AM , Anonymous caren said...

I became one of the "twenty-two million strong" on July 11, 2006. I would usually think of 7-11 as being lucky; however, on that particular day, I did not know how unlucky I would begin to feel shortly after the surgery. My mother had died from Uterine Cancer in 1998. After I began having very heavy bleeding every month for an extended period of time and became anemic, I went to a doctor that my friend (at the time) recommended to me. She had already been hysterectomized by this doctor. After having just read the percentage of women who now suffer from a long list of post-hysterectomy maladies, I almost feel better knowing that there are, in fact, many other women who can empathize with what and how I've been feeling for three and a half years. I am literally sitting here sobbing as I'm typing, wondering when the aches, pains, brittle hair, suicidal thoughts and weight gain will subside, among others. I know that I will feel better supporting HERS activism (I wanted to find a new cause for 2010 and here it is, I wish I had found it sooner...) Caren

 
At September 3, 2010 at 10:37 PM , Anonymous Purpose said...

I was 40 when my life changed. I had a hysterectomy for heavy bleeding and my doctor told me women do better without their ovaries what did I know. So I called 4 nurses I knew and they said get the ovaries taken out you don't want ovarian cancer. They were wheeling me on a gurney and I told the doctor I still did not know what to do. They proceeded to shove a piece of paper at me that said I was explained the consequences, I said what consequences and a nurse said the you will feel better than you have in your whole life. 36 doctors later and Mayo Clinic and Scripps and no one can seem to balance the hormones from my so called feel better than you have in your life surgery. Lupus, fibromyalgia, suicidal depression, anxiety, chronic fatigue, thyroid cancer. Who would know what this hysterectomy could wreak havoc on. All I ever heard women say it was the best thing I ever did. IT HAS DESTROYED EVERYTHING ABOUT ME> I want me back not some crazy lightheaded out of her mind person that I have become not to mention the 50 lb weight gain. So after spending 60 thousand of my life savings, I am going out of the country and having an ovarian transplant. I refuse to live the rest of my life this way and when I get back and go on the news I believe it is the rest of my life mission to go on every media thing possible and give my story. They messed with the wrong girl. I will never let this nightmare happen to any innocent victim again.

 
At September 10, 2010 at 7:41 PM , Anonymous Sh-t Disturber said...

I attended a program on "A Candid Discussion about Women's Gynecological Health Issues" sponsored by Missouri Baptist Hospital in St. Louis. There were three doctors that presented, an ob/gyn, Timothy Philpott, M.D., a urologist and an interventional radiologist.

The first presentation was done by ob/gyn Timothy Philpott, M.D. He covered some treatments for gynecological problems including fibroids, excessive bleeding, prolapse, endometriosis. Hysterectomy and myomectomy were included along with some non-surgical treatments. He failed to include the many adverse effects of hysterectomy. Of course, this wasn't what one would call a "candid" discussion but no one should be surprised by that!

As one would suspect, the urologist covered treatments for bladder prolapse and incontinence including his partnership with Dr. Philpott to suspend the bladder during gyn surgical procedures, hysterectomy included. As we all know, the bladder will fall after the uterus is removed. With the outrageous number of hysterectomies, I'm sure the urologist is doing quite well financially!

The UFE presentation was last. It included some hyst consequences - sexual dysfunction, bladder prolapse, physical and emotional effects - probably intended more as a marketing ploy for UFE than educational. A 1 in 300 chance of embolism from UFE was mentioned.

The following well documented consequences of hysterectomy were not covered during this "candid" discussion:
- If a woman experienced uterine orgasms, she will no longer experience them after hysterectomy
- Physique changes - The severed ligaments will cause the spine to compress resulting in a protruding abdomen / thickening waist leading to back, hip and leg problems. (Interestingly but not surprisingly, back problems were mentioned as a symptom of uterine prolapse yet there was no mention of this common consequence post-hysterectomy.)
- In 35-40% of hysterectomies, the ovaries fail prematurely due to the loss of blood supply.
- Removal of the uterus increases risk of heart disease 3 times that of an intact woman. This risk is 7 times when the ovaries are removed.

And, as if this isn't shocking enough (although it really isn't shocking to those of us who know the truth about the tactics used by those in the hyst industry), Dr. Philpott also stated that if a woman is post-menopausal, he recommends ovary removal to eliminate the 1 in 70 chance of ovarian cancer. (Testicular cancer rates are similar yet they don't prophylactically remove testicles! Ovary / testicle removal is CASTRATION.)

During Q&A, after going through "all" the index cards of attendees' questions, I asked why they didn't address mine. The facilitator denied getting my card even though I saw the other woman hand it to her at the podium. Of course, there was no answer so I started to speak saying that they hadn't addressed the adverse effects of uterus removal on heart, bones, physique, sexual function. I stated that the ovaries function throughout life and that they're the equivalent of a man's testicles - would they have their testicles removed? I don't think so! Of course all three doctors just sat there probably flabbergasted! I said that ALL women deserve to know the facts before signing a consent form and suggested they go to www.hersfoundation.com to get these facts. At the time I didn't know about http://www.uterinearteryembolization.com/ or I would have mentioned it too.

 
At November 25, 2011 at 9:17 AM , Anonymous xlpharmacy said...

I was one of the people that were affected by the hysterectomy and castration and I have not been compensated yet, I don't know why!

 

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