By Robert Knutzen, CEO of the PNA

For nearly 30 years I have been a hormonally-challenged patient and I’ve been a patient advocate, educator and leader for 17 years. I am greatly perturbed at the rather simplistic and often dismissive references and attitudes toward hormone replacement both for men and women. I was once told by my endocrinologist (tongue in cheek) that I was one of the first men he knew who had fully experienced menopause. I have also spoken with and for thousands of menopausal women, so I feel relatively experienced and qualified to enter this vital debate. In my own case, it was a growth hormone secreting tumor, which also induced an increased prolactin level with a milk flow as well as subsequent hypogonadism requiring testosterone replacement and numerous medications.

Our organization represents young girls, women of all ages, boys and men, often in desperate physiological and emotional straits and in need of complete hormone replacement therapy, not just limited to gonadal hormones. Medical dictionaries too often do not properly explain menopause and will tell you that it occurs in a woman’s life between the middle thirties and the late fifties. The PNA knows this is sometimes very wrong. A woman with surgically removed ovaries in her twenties may be more in need of proper hormonal replacements than the 55 year plus woman who already had her children. A young girl with no menses, a pituitary disorder or tumor is more likely to be lightly dismissed by her physician, told to wait, or accept the fact that she is stressed or that her symptom is just an aberration rather than being treated seriously with hormonal replacement with the same determination and aggressive approach as would a middle aged woman. The current attempt at regulating a woman’s menses by masking or delaying her periods with medicine for months or years is frightening and should be abolished at once. One of the most reliable signs of menopause is, of course, irregular or ceased menses. So problems with menses are a vital warning sign of other ongoing or impending pituitary/hormonal disorders leading to early menopause.

In a young girl or woman this can clearly be devastating and many times life-threatening. I can state with absolute certainty that menopause can happen at any time in a woman’s life, for many reasons. Human sexuality has been declared by the AMA to be a public health issue. Those of us who meet, correspond with or talk to women of all ages on a daily basis realized years ago that a woman’s reproductive and sexual life is considered by her to be a most precious gift. So, failing to treat it as such is a gesture of indifference and lack of caring, not worthy of the medical establishment.

It is extremely important to patients, the medical community, political leaders and the public that menopause be recognized for what it truly is: an event-related period, or passage, in a woman’s life. It is not related to age, except coincidentally, and it is crucial that the medical community come to an agreement of what constitutes menopause. We need to understand that millions of young girls and women, most with the truly important parts of their lives ahead of them, should also be included in the equation and properly treated for their hormonal shortfalls.

I fully recognize the "thin ice" on which I stand, from a medical point of view, but I am on a "solid rock" when I tell you that the uncertainty of definitions, cause, ages of onset and treatment options causes an enormous amount of confusion, anger, disappointment, and anxiety in patients. Too often it is a convenient "peg" on which insurance companies hang their decisions to refuse to pay for treatment. Sadly, the confusion seems as pervasive within the general medical community, and I am not certain that the millions of affected individuals can tolerate such ongoing vacillation and debate over a subject so important to every woman and every family in the world.

The problem arises from the fact that I know with absolute certainty of menopausal teenagers and young women, in large numbers, who seek answers and hormone replacement for their malfunctioning pituitary gland but are too often treated in a hit-or-miss fashion by their physicians. The doctors, along with the patient and the concerned parents, never suspect that their "little girl" is in fact menopausal and requires a complete hormone replacement cocktail, not just limited to estrogen-progestin replacement, but a total and complete evaluation for growth hormone deficiency, thyroid deficiency, adrenal deficiency as well as gonadal/reproductive and sexual issues. Clearly a 24-year-old woman has vastly different life goals, needs and aspirations than a 60-year-old grandmother who is seeing the beginning of the lengthening shadows of the end of her active life.

For those who wonder about the large number of patients I mentioned, please let me bring you up to date. In 1934 Dr. Russell T. Costello of the Mayo Foundation conducted a thousand cadaver autopsy series looking for pituitary tumors. With the less sophisticated tools of the time he found that 22.4 of these individuals harbored these tumors in various numbers and sizes. Today it is estimated that closer to 30% of the adult population carries these tumors through a large period of their lives. We now know that pituitary tumors first attack the patients’ sexual and mental well being. Even previously believed "silent" or hormonally inactive, pituitary tumors are now found to be gonadotrophs in ever increasing numbers.

Though no one yet knows the precise numbers of clinically "significant" tumors, a currently conducted meta analysis of relevant medical literature states this: "From a total of 33 articles reviewed, 13 were found relevant and useful. It is now estimated that the prevalence of pituitary adenoma across all autopsy studies was from 14.4 % compared with 22.5 % in radiography studies." In addition, in large, but as of yet uncounted numbers, you have the patients with other pituitary problems and disorders, often from head trauma or other unfortunate events. They are also menopausal, but in many instances while undiagnosed and untreated, often for years.

Put in common street vernacular, this problem affects one heck of lot of people! I quote from an article by one of the many patients we have helped, a journalist named Judith Dancoff.

"I was first diagnosed with a tumor on my pituitary gland when I was 29 years old. Before that I lived for most of my twenties inside a mind and body that no longer worked: sudden weight gain, depression, bouts of anger. My periods stopped, I lost all interest in sex, my pubic hair fell out, and orgasms, which once had been easy, became impossible. Though I saw a doctor every year to try and determine the problem, it took him seven years to come up with a diagnosis." She goes on: "The tumor changed all that. It was not cancer, but it put me into menopause - actually worse than menopause - since small amounts of hormones remain in older women’s bodies, but this was not true for me. All the normal hormones shut down; estrogen, testosterone and the numerous others that make sexuality possible."

In addition, the advancing knowledge of women's hormonal states leads me to the following conclusion: of the approximately 600,000 hysterectomies performed in the U.S. every year, about 200,000 are for polycystic ovary syndrome (PCOS), and may in fact not be necessary. If 200,000 women can be spared the bodily assault a hysterectomy represents and merely have the cysts removed, they can go on with pregnancy, motherhood and normal aging as other women do.

I will end my comments with this: Before you can continue a rational discourse of menopause and hormone replacement you must first agree to the magnitude of the issues at hand. The true ages and size of the affected population and the educational steps needed to alert both the medical community as well as the general population as to the true meaning and effect of menopause is important. But most important of all: we need a clear and precise definition of menopause as well as recommendations for full and complete hormone replacement therapy for women of all ages when needed. To that I will only add: think pituitary!