Tuesday, April 13, 2010

Tell the Truth About Hysterectomy!

Do women really get the whole truth about hysterectomy before consenting to this all-too common procedure? I know I didn't.

Nora Coffey, head of the HERS foundation, has been convinced for years that women do not realize that they will certainly lose some sexual feeling; will likely have problems with their bladders and bowels; that they may suffer back pain and see their waists enlarge as their internal organs and bones shift in place because where their uterus used to be is now an empty space. In the years since I underwent a hysterectomy in my mid-40s, I have suffered all of these symptoms, and my doctor never mentioned a single one. (It was a woman, by the way.)

On Friday, April 24, the foundation will hold its 28th Hysterectomy Conference at the Hilton New York Hotel in Manhattan to focus attention on an effort to require that women learn about all the possible consequences of hysterectomy before consenting to the procedure. The conference will feature an Indiana state legislator who is the first to introduce legislation requiring such disclosure.

And, the keynote address will be given by U.S. Congresswoman Carolyn Maloney of New York who will reportedly raise the issue of unnecessary hysterectomies in the House-Senate Joint Economic Committee, which she chairs. Experts estimate the cost of unnecessary hysterectomies at $17 billion a year.

I'll be covering the meeting for womensenews, a non-profit that specializes in news of particular interest to women.

But in this case, I certainly think that men would like to know about a medical procedure that will most definitely affect their sex lives along with their female partners!

The HERS foundation is advocating that women be required to view an 11-minute video it produced before consenting to hystserectomy. The video shows in a very matter-of-fact manner, using only color diagrams and voice-over-text, the story of female anatomy that somehow got left out of all our high school health classes.

"Women who watch that get it: they understand this is very serious surgery," says Coffey, who believes requiring the video is the only way to bring down the number of women who lose their uterus every year. As I've blogged about before, an astounding one out of every three American women have had surgery to remove their uterus by the time they are 60, and of those, 75% also lose their ovaries, the equivalent of male castration.

There is precedent for requiring the showing of videos: Utah, for example, requires women who are seeking an abortion to see one. Drug companies are required to put informative inserts into packages of medication, for example in birth control pills, thanks to the historic efforts of women's advocates including Barbara Seaman.

Losing your uterus is not like losing a tooth. Lose a tooth, and you can still chew with the others or get a false one to take its place. Each woman get's only one uterus, and it's so much an integral part of our bodies that you don't even realize you'll miss it until it's gone. And then, it's too late.

12 comments:

gracie said...

Dear Frances, Thank you very much for covering the HERS Conference.

I have written dozens of editorials about female castration and other women's health articles in my local papers. I am well known by doctors and nurses in this area.

We each have our own story about life after a hysterectomy. Mine was over 21 years ago. It is not a good life, but all you can do is put one foot infront of the other and keep going. Passing a law to stop doctors from hysterectomizing and castrating women is my motivation and drive to continue on.

This would not be happening if men were being castrated to the tune of hundreds of surgeries a day like women. That is called barbaric! Why isn't female castration barbaric?

The HERS Foundation, Nora, Rick and staff deserve a huge thank-you for keeping this in the spot light.

Anonymous said...

Frances, a quick tour of your site tells me that you and I are poles apart on many views. Yet, on the issue of unnecessary hysterectomy, we find all too common ground.
I take great heart in that that common ground lends foundational support to a common cause. Frankly, I'm tearfully grateful for your coverage of the HERS Conference. Grateful, too, for your honesty in speaking out about your own hysterectomy. I know from personal experience how very difficult that can be.
The unnecessary and highly damaging mass de sexing of women is not an inheritance that I would leave to my daughter,- or, to my son. As a Nation, we need to be better than this. As a Nation, we need to stay the all too quick gyn surgical hand. And giving patients truly informed consent is the only manner in which to do it.

Cathy said...

Dear Frances, I was also not given any information about the risks or consequences of this surgery. This happened to me after going to the Emergency Room in pain 3 1/2 years ago. I adamantly refused to consent to a hysterectomy, but woke up hysterectomized and castrated anyway. Even then, I was very naive and uneducated and believed that the doctor had to perform an emergency hysterectomy because he said, "he had no choice." However, I learned shortly after that it was completely unnecessary. I was devastated and horrified and thought it must be a rare occurrence that something like this would happen to a woman in the United States, but the first time I talked to Nora Coffey, I learned that this abusive treatment is done to women all the time. How incredibly shocking, how could this be? I am still shocked to this day as how this could go on in the U.S. I have talked to many women who have been hysterectomized and not one was told anything negative about the surgery. Not only that, most of them have no idea why the surgery was even performed, other than they were told they needed it or were scared into an operating room with a fake cancer threat.

I am grateful that you will be covering this Conference and thank you for speaking the truth. I had no clue that any of this was going on until it was too late. Every woman in the world needs to see the accurate information that the HERS Foundation provides. Had I been able to watch the HERS Foundation Female Anatomy Video or known about the HERS Conferences this would not have happened to me. I was a very healthy person before this, but now I have multiple health problems, most of which are described in the HERS Foundation Adverse Effects Data at www.hersfoundation.org. It's terrible to have to live this way just so doctors and hospitals can make a huge profit.

Bibi said...

Dear Frances,
I first have to thank Gracie for letting me know about you. I want to comment too...

I have experienced and still do what others have shared here. I was 'scared' into having a Hyst. for two small fibroids in my uterus. I had faith, trust, and believed what a long time GYN I had been seeing said to me that a Hyst. was the only option. His scare tactic was that I was losing so much blood every period; I could not afford to have even one more. I thought he advised a Hyst. because he cared for my welfare. He also never gave me any alternatives, or told me of any complications I might face and live with after a Hyst. - nothing.

My husband came to one Pre-Op appt., and this GYN said the surgery would make me "feel even better", and also "our sex life will be even better". He even winked at my husband as he said, "Think about it - no more bloody periods." My husband gets very angry when this subject is brought up, or he hears me complain about a pain now; such as, whenever I bend over, since the Hyst., I have such horrific back pain. That is just one negative symptom. My husband also is angry due to our love making going from 'Fantastic' to 'Zilch'. My red, sexy, lingerie outfit with garters and fishnet stockings has 'cobwebs' on it now, as well as the others. I can't even say to my husband, "It is the same as a man having half his penis cut off, and his testicles removed". He says, "Stop! I couldn't live that way!" I am sure he is not alone, as a male, with his feelings.

It is sick to think how long this has been happening to females, and doctors and hospitals getting away with this. It is barbaric, and women are still treated as 'second class' citizens. We live in the United States of America. I want to be proud of our country, but not proud to be in a nation which lets this happen. Of course - it was less than 100 years ago that a law was passed giving women the right to vote. I feel the people at the Hers Foundation, EmpowerHer, and other organizations fighting for women on this subject are like those women and men who back in the early 1900's fought to earn the right for women to vote. I pray that this law is passed in all states, and this not take as long as it took for women to earn the equal right as men - just like being able to voice and vote. Until then - we are still "second class'. Plus, it is so "Barbaric". Never, ever would men be subjected to such outlandish acts and outcomes.

I have to live in physical pain now. I wish there were cures for my physical problems due to the Hyst., and also our sexual life (my husband and I) has been so devastated when so 'rich' before. Why was I not told of these possibilities happening? Why was I not told of alternatives to save my uterus and ovaries? Any male would. I rest my case...

On a final note: Thank you, Frances, for going to the conference, and covering it. Bless you!

Take care all,

Bibi (SeeDandy) Toni

Anonymous said...

Frances, I too underwent a hysterectomy (via a female doctor), and I was not provided any information concerning the surgery because I signed a "Myomectomy Consent Form". On my first appt. with doctor, I informed her that a hysterectomy was not an option for the treatment of my asymptomatic fibroids. She agreed, I sgined the consent form, and she promptly then completed a total abdominal hysterectomy.

For this doctor it didn't matter, that I said no, it didn't matter that I was 35, it didn't matter that I didn't have children, and it didn't matter that the fibroids were asymptomatic.

I will be at the conference as I found HERS during my desperate search for help post-op when my world came crashing down in pain and lost of previous health and the surgeon claimed to have no clue as to what was happening and never knew of anyone with such issues.

Bibi said...

In reference to Anon who posted at 4:07 p.m. today:
Isn't it interesting with regards to your last paragraph and your GYN stating she had never heard of any of her patients having any 'issues' (Post-Hyst.), and had "no clue" to what happening with you. I HEARD THOSE SAME STATEMENTS BY THE GYN WHO CASTRATED ME. There are so many who have posted here and other sites I visit who have also said the same. Isn't this something?

My GYN (well, he is no longer "my GYN") said to me after I complained for nine months after my Hyst. that something was wrong, and I never felt worse, and told him all my physical problems (oh, just the lower back pain whenever I bend over, he said, "Well, I have just never heard of anyone else with problems; so, I guess it best you go get another opinion." Well, at that point, I was anyway, but I felt he was just passing me off. After all, he had been paid; therefore, why deal with my problems now? He knew I had signed a consent form; therefore, he was okay, and I felt as if he was trying to 'sweep me under the carpet'. At that appt., I honestly felt 'raped'/'taken advantage of'. I left there crying. I was so upset that he got away with what he did, and I thought he cared, but now felt he used me and abused me. Just because doctors have those certificates hanging on their walls; it does not make them decent human beings...

I cannot fix what happened with me, but I will try to spare anyone I know from having this happen to her/him. (Yes, him; in that, our significant other/husband is also abused.) I have had dreams about going into this GYNs office and 'slapping him silly'. If a doctor ever did this to my daughter, I would do it that doctor in real life, and that GYN better not have any 'sharp objects' in his office...

To all going to this conference; I commend you, and I know it will be an effort to attend by many. 'Atta Girl' to each of you, and also 'Atta Guy' to those of you too!!!

Huge Hugs!!!

Evelyn said...

Francis,
I am one of the multitudes of women who have been victimized by our country's hysterectomy machine.
I chose a female doctor hoping for empathy. When I expressed concern about my sexuality and bladder prolapse, she refused to look at the information I brought supporting my concerns. She assured me none of her patients had complained of those things in fact, most were happy with their decision, there was nothing to worry about. She told me not to think so much, she "was only removing the crib- she was leaving the playpen".
All the toys in my playpen were smashed to bits! I also had a strange and painful sensation at my incision and was numb from the incision down. Two years later, after several invasive tests, I diagnosed my hernia and underwent another surgery to repair the damage that had been there since my first follow-up.
Every doctor's appointment felt like what I imagine it feels like to be raped. They were so upsetting to me that I couldn't control my crying to talk; and I have been a competitive speaker,so I composed a letter to read to her detailing my complaints. Her response - "next time you want to go on like this, you need to schedule a longer appointment"; no acknowledgement, no sympathy, just a scolding for messing up her schedule! She had the same complaint after the surgery; I had adhesions that interfered with her schedule that day, too which she told me immediately upon coming to see me and my husband.
I was so angry that I was seeing a therapist to deal with it. When I told her, she said it was a really good idea because there was no rational explaination for my complaints. The therapist had an explaination; I was angry at my husband and my lack of sexual response was my way of punishing him! He believed it because the whole medical establishment claims that hysterectomies only improve your sex life!
After countless fights and tears, I went to L.A. to see a specialist in sexual disfunction who confirmed that I had virtually no sensation in my genitals and that it was a common problem in women who had hysterectomies. About six months and many more fights and tears later I found the HERS site and decided to attend a conference. To my great surprise my husband wanted to come, too. I think he was looking for some falacy in my arguments. In spite of his best efforts, he heard dozens of other women saying exactly the same things I had been saying. He didn't understand why so many women said they were happy with their hysterectomies if all this was true but, he came to accept that I wasn't trying to punish him for some imagined offense. We spent the next five years in counseling, trying to restore our previous relationship. Unfortunately, we were just short of our goal when he died last May.
From a purely practical perspective- all the procedures and therapies were paid for by our health insurance. Everyone's premiums bore the cost. If we get government health care in the future it will bear the cost of this for people trying to salvage their lives. If we want to cut health care costs, stopping unnessary hysterectomies and the following related treatment including therapy, antidepressive medications, surgeries, pain meds,etc. this seems like a good place to start! If we want to decrease the divorce and suicide rates; this seems like a good place to start! If we want to slow the rise of mental health problems, this seems like a good place to start!
We are all shocked by female genital mutilation in Africa and the Middle East. Why are we NOT shocked by widespread female sexual mutilation in the United States which, professes to value women? Why are we NOT moved to action?
Thank you for shining a light on this situation so that other women can be spared this horrific experience and letting the ones who have already experienced it know that the suffering they feel is NOT "all in their heads"!

Frances Cerra Whittelsey said...

I am humbled and saddened by all your comments. I had never equated female genital mutilation with unnecessary hysterectomies, but it is so obvious now! I had also never realized how lucky I was to prevent my doctor from removing my ovaries. My physical and sexual losses are nowhere near as serious as those of you who were castrated.

I hope you will look for the story on womensenews after the conference. And I will also blog here about it.

Bibi said...

Oh Evelyn,

I just read your comments. Bravo, girl! Of course, I feel all sorts of emotions each time I read another female's story of horrible things which happened to her before, during, and after a Hysterectomy. I get angry, sad, sympathetic, and want to get on a rampage. I just took heart to your story here; in that, what you tell about, on top of the quack of that doctor of yours and that therapist, but what you share about your husband, and he not believing you until it took going to a Hers conference. I am grateful my husband has believed me from the start. I have said it before; that I was a 'sex kitten' pre-hyst., and he witnessed an immediate change in me with wanting to make love and promote it, as before; therefore, he did not need convincing from anyone else that the Hyst. devastated my sexual desires. My heart goes out to you regarding this, and must have been 'Hell', and you probably, at times, were led to believe something was wrong with you in your head. Oh, this makes me mad. It makes me made too; because, you are not alone with your similar story. You also made some excellent points. Hey, those in our boat, all do. I just feel sorry for those women out there who are in hiding, told it is in their heads, and I am sure there are those who do the 'cover-up' because they are afraid to speak up. The same which happened to you could happen to them, and just scared to 'go there'. I have seen something with a couple family members of mine. They think it is in my head, and I should just "get on with my life". I am learning to stay away from these negative people and sources...

Hugs to all,

Bibi

Anonymous said...

Frances, please consider delving into the medical history of hysterectomy and ovary removal. Older gyn texts often back what has been said here.
That is, until it became oh-so-politically incorrect... There was even a point where the medical profession actually acknowledged some of what we are saying-- but packaged it as benefits for a husband! There was a point where ovaries were piled into trophy displays. (sigh) To me, not unlike today's "The One Kilo Club."
To learn fetal development, pregnant women at clinics were hysterectomized at different stages of pregnancy. I'd suggest reading, "The Time Has Come," by John Rock, who is the first of three generations of very high profile gyns. You can buy it used at addall.com for a couple of bucks.
While you're at it, pick up Professor AC Barnes', "The Social Responsibility of Obstetrics and Gynecology" which details a gyn conference held at John Hopkins dedicated to how to best control the population of what the book refers to as "the second class human machine." All so that the world would be a fit place "for them, their children, and their grandchildren."
Frances, the issue of unnecessary hysterectomy and castration is like turning over a river boulder. You'll be shocked at all the lower life forms that you'll find there.

Anonymous said...

Frances-
Thanks for your excellent reporting. In New York state we have a Hysterectomy Law on the books. In New York City, there is also a very specific Sterilization Law. Please review this law. Among other requirements, It requires a third party not connected to the doctor to give information to the patient about the sterilization. Hysterectomy is certainly sterilization. This went into effect around the 1970's after poor black women were taken into New York city teaching hospitals to be used by residents for training purposes. however, the laws are not being enforced as the same thing happened to me in the year 2000- decades later. I have complained to the New York State department of Health and The New York City Department of Health when I was used by residents for an unnecessary hysterectomy performed by unsupervised residents in the absence of the attending doctor. This is another violation of New York State law and is known as ghost surgery. They were blasting the loudest rock and roll music imaginable while operating on women. I emerged with devastating neurological injuries when I was over sedated and stopped breathing. I believe there is a cozy relationship between the department of health, the doctors and the courts. It would be an interesting statistic to find out if complaints have ever been acted upon or if the law is enforced. Perhaps as a reporter you can find out this information.
Margaret

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