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Uterine Fibroids & Hysterectomy
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Uterine Fibroids and Hysterectomy

By Carla Dionne
Executive Director

In the last 20 years, over 12 million women in the United States have undergone hysterectomy. Out of those 12 million, roughly 177,000 to 366,000 (1,2) were performed annually for the treatment of uterine fibroids. 3.5 to 7.3 million women in the U.S. over the last 20 years may well have undergone hysterectomy for a relatively benign disease, unnecessarily.

These numbers are conservative estimates based on discharge records from a select group of hospitals, and probably represent the lower end of the prevalence of hysterectomy in the United States (there really isn't any reliable tracking that reviews all hospital records and pathology reports for presence of disease of the uterus across all institutions collectively in the United States). In fact, a constant debate rages over whether or not the numbers are actually higher. No one, however, disputes the baseline figures, figures that clearly represent a medical practice that is not serving the best interests of the patient.

It truly has to stop. Because no matter how you slice the "pie" chart in attempting to explain away the numbers, the filling is always rancid. 3.5 to 7.3 million women undergoing unnecessary surgery that permanently alters their overall health and quality of life. 3.5 to 7.3 million in the U.S. alone, simply for the treatment of uterine fibroids.

While one could argue that 20 years ago there may have been limited solutions to the treatment of uterine fibroids, today there is simply no excuse for these numbers. There are numerous procedures that directly treat the disease of uterine fibroids, and do so without removal of the uterus.

Current treatments include:

Watchful Waiting

Simply put, if your fibroids are asymptomatic - not causing you any immediate physical distress, then it may be truly unnecessary to proceed with any treatment whatsoever.

Myomectomy

The surgical removal of just the fibroids. Depending upon the size and location of the fibroids, this can be done hysteroscopically, laparoscopically, or through abdominal surgery. While gynecologists do receive training for these three procedures, not all are skilled to perform them. Sadly, a gynecologist's recommendations for treatment may have more to do with his own skills and comfort level for performing any one procedure than it has to do with what is best for the patient's medical condition.

Uterine Artery Embolization
(UAE also known as UFE for uterine fibroid embolization
)

Uterine artery embolization is a procedure performed by an interventional radiologist, and involves the placement of very small polyvinyl (plastic) particles into the uterine artery that feeds the fibroid tumors. It's a relatively simple, non-invasive procedure that causes the blood supply feeding uterine fibroids to be cut off. Without a blood supply, the fibroids die and shrink. UAE has been around for over 20 years and used, primarily, for stopping hemorrhaging after childbirth or surgery. Only within the past ten years have gynecologists started working together with interventional radiologists to introduce this procedure as a standard non surgical option for the treatment of uterine fibroids. Its acceptance has been slow, however, because gynecologists do not perform the procedure. By referring women for this procedure in lieu of a hysterectomy, a gynecologist loses the surgical fee involved.

Myolysis
(myoma coagulation)

This procedure also cuts off the blood supply to the fibroids, and causes them to wither and die. Patients begin with several months of treatment with a gonadotropin releasing hormone (GnRH) agonist such as Lupron, a drug given by injection, to shrink the fibroids as much as possible, and then laparoscopic surgery is performed. Through laparoscopy, a laser pierces the fibroids, and electrical charges are sent to the fibroids to destroy the blood vessels.

A similar procedure to myolysis is cryomyolysis. With cryomyolysis, liquid nitrogen at minus 180 degrees is sent to the fibroids through a cryoprobe. The fibroids literally "freeze to death".

(A few words of caution about the drug Lupron -- There are many side effects to this drug which was originally developed and FDA-approved for the treatment of advanced prostate cancer in men. These days, however, Lupron is widely used by gynecologists to treat women for a variety of routine gynecological problems. According to a special report series published by the Boston Herald in August 1999, some specialists are now saying that the long-term effects of Lupron can be dangerous and harmful, and that not enough studies have been done to adequately demonstrate that it is safe and effective).

Clinical Trials

With every passing week, more and more researchers are joining the current scientific community that is attempting to find a "cure" for uterine fibroids. There are currently a multitude of clinical trials that involve a variety of potential solutions. If you are certain that none of the above solutions fit your needs, rest assured that it may be only a matter of time before new solutions rise out of the current research. If you don't want to wait for the outcome of these trials, you can always take the necessary steps to join a clinical trial, and contribute to the body of knowledge that will help millions of future women who will, most certainly, find themselves facing this disease.

Of course, spending time to learn more about your own uterine fibroids may help you to better determine which course of action might be best for you. With just a little bit of research you are more than likely to find that hysterectomy is a rather drastic and final solution to a relatively benign condition.

Although the alternative surgical solutions listed above for the treatment of uterine fibroids have been around for quite a few years, the hysterectomy statistics have remained the same. My question is simple. Why? Are women not taking the time to learn more about their uterine fibroids before consenting to a hysterectomy? If not, why not? And, why do doctors continue to hysterectomize women unnecessarily for uterine fibroids when alternative procedures are available? To begin answering these questions, we must start by asking ourselves the following question. What, exactly, are we (as women) doing or not doing that is empowering doctors and not women in making that ultimate medical decision to have a hysterectomy?

The following are my thoughts and conclusions on this topic.

A good salesman knows how to make people buy things in spite of themselves.

A good doctor is someone who understands that his/her job is to:

remain educationally informed in his/her area of
expertise;

treat patients professionally;

offer information and guidance that is up-to-date (vs. outdated) with current medical literature; and

allow the patient to make the ultimate decision regarding her health.

Once a decision is made, if the doctor is not the best person to perform the chosen procedure (if, that is, a procedure is chosen), an appropriate referral should be given to the patient.

Is your gynecologist a salesman or a doctor?

How does one begin to teach women to recognize, understand, and deal with their doctors? How do we go about empowering women regarding matters of their health so that they can be proactive in caring for themselves, and in seeking information and assistance from appropriate medical professionals?

The primary and most natural tendency, for many women, is to personally accept blame and feel humiliated and/or get depressed when they determine AFTER THE SURGERY that the choice they made was not, perhaps, the best choice available. Don't do that to yourself.

If your concerns are dismissed, find another doctor. You need answers, and you need to stay strong. Don't stop until you actually get the answers to your questions.

If you have been told that you need to have a hysterectomy, but haven't undergone the procedure yet, it's important to write out all of your questions about the procedure, and any alternative solutions that might interest you. Then, seek out the answers by first returning to your doctor and posing the questions to him or her. Remember that doctors are only human, and they may not have all the answers. Regardless, they should be open and willing to discuss your medical situation with you, and attempt to help you find the answers that will guide you in making an appropriate health decision.

In attempting to find answers to my medical questions, I have learned that one of the most powerful tools to come along is the Internet, the World Wide Web. No other resource tool available today can provide as much information as can be found here on the Internet. In addition, no other resource tool available today allows women to log on and "chat" with other women from around the world with similar medical conditions or complaints. Thousands upon thousands of women are logging on and doing just that today, with more signing up with each passing day.

Of course, not all of the information on the Internet is accurate. It goes without saying that women should research what they learn, and not blindly accept an individual's word as authority.

I applaud the many women who have developed web sites addressing medical issues such as hysterectomy because more efforts like these are exactly what is needed to bring the information to the forefront of women's minds.

In addition, through the multitude of online "chat" sessions and message boards, there is something new to learn each day about what doctors are doing and telling patients and, sometimes more importantly, as in the case of hysterectomy surgery, what doctors are NOT telling patients. The Internet, along with the groups of women that I have corresponded with over the past few years, changed my life and the way I think about medicine in a much broader perspective than I ever could have imagined.

I had a dream awhile back where I could see a million women marching on Washington, D.C. They were marching in protest of the hysterectomy statistics, the inability of women to get alternative procedures performed or paid for by insurance, the ignorance of the medical community in regard to the impact of pelvic surgical procedures on sex, the overall quality of life issues that are affected drastically by hysterectomy, and so on. But the odd thing was that the dream was quiet. A million women marching on Washington, and it was completely quiet. I have been on marches in Washington before - they are ANYTHING but quiet! The dream had me totally perplexed.

Then, I described the dream to my husband. Thoughtful man that he is, it took him less than a minute to turn to me and say, "Carla, you were dreaming about the Internet." And he was right. I was.

How do we go about empowering women regarding matters of their health so that they can be proactive in caring for themselves? By encouraging them to become actively involved in learning about their condition, and sharing with others what they find out on their own individual medical journey.

The Internet has exploded with women's health information written both for and by women who have already embarked upon their journey, and are now willing to share with others. Health-related support groups are abundant, and are almost entirely driven by women on the Internet. Regardless of whether or not you've already undergone hysterectomy, won't you please accept my offer to join us?

A very special note to Beth Tiner: Thank you for providing a forum (Sans Uteri) for women to share and open the doors to communication. You broke ground for women with a list group that discusses openly, every day, subjects that are taboo in most doctors' offices. You did it from home, and you did it on your terms. You have educated and inspired many women to follow in your path. When you didn't have the strength to march on Washington, you did it online. Thank you for paving the road for others to follow and build upon.

1. National Center for Health Statistics. Ambulatory procedures in the United States. (Hyattsville, Maryland: Public Health Service, 1998) 99-1710.

2. Lepine LA, Hillis SD, Marchbanks PA, Koonin LM, Morrow B, Kieke BA, Wilcox LS. Hysterectomy Surveillance - United States, 1980-1993. Morbidity and Mortality Weekly Reports 46 (SS-4) (1997): 1-16.

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