12. Identify barriers to discussing sexuality.

13. Learn how to approach the subject of sexuality in a medical setting.

14. Understand the impact and components of female sexual dysfunction.

Section 2 > Exercise 8 > Sexual Dysfunction

Clinical correlate #10 : Pituitary abnormalities

Read the following personal essay and answer the discussion questions below.

A Merging of Head and Heart (excerpts)
by Judith Dancoff

I have a seam on my hand, a joining – the two lines that run across the palm, that are on most hands separated by millimeters of flesh, on mine are joined, as on the hand of a monkey. A simian hand is what it is called in science, a crease that marks a chromosome disorder: on the 18th chromosome, down syndrome; on the 11th, other disorders, more rare, less understood.

But I like what fortune-tellers say better, to the one in a million who shows up with the hand. In China they say great fortune, at least for a boy. He is destined to be Emperor, most wealthy, very renowned; not so lucky for a girl. In Western palmistry, the predictions are equally extreme: "Because the head and heart lines are connected, the person experiences life at its most intense. This produces a single-mindedness of purpose that can yield extraordinary achievements, but also great pain." If the fate line intersects the head and heart at their place of joining, as it does on my hand – an asterisk, a small star even – the individual will be remembered for generations.

This is one prediction I find hard to believe. I have already lived half my life and have achieved nothing extraordinary, though who can predict the future except fortune-tellers? It would certainly be a recompense, a payback, for living with this monkey hand of mine, inside this head and heart that are far too connected.

I was first diagnosed with a tumor of my pituitary gland when I was 29 years old. Before that I lived most of my 20s 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 had once been easy, became impossible. Though I saw a doctor every year to determine the problem, it took him seven years to come up with a diagnosis, and only because my mother read an article in Newsweek linking birth control to lactation. Once, when I was nineteen, I lactated, and my mother never forgot that. When I told him the story, the doctor ran a blood test and then said proudly – for they had just invented the diagnostic tool to know this – that I had a benign tumor of my pituitary, the master gland of hormones that sits just beneath the cerebral cortex. This was the cause of my problem, he said, my lack of ovulation, that had brought me to him in the first place. The tumor secreted a hormone called prolactin, responsible for nursing, but it could also stop periods. He never mentioned my sexual problems, and being a young woman in an age when all emotional sexual difficulties were psychological, I was too ashamed to tell him. Thorough brain surgery was in order, radiation; he was excited, and I was glad too, for finally some reason might be given for all the ways my life had changed.

Mostly it was my love life that had changed. For a brief time in my late teens and early 20s, my romantic life was better than normal, so I have a clear basis for comparison. I came of age in the sexual revolution, probably my one piece of luck in all this, and I can recall telling girlfriends that my favorite thing to do in life was have sex. When a boy kissed me at the front door after a date, I always let him in for more.

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 combine to make sexuality possible. I became biochemically frigid and have remained so for the majority of my adult life. I am on estrogen and other drugs today only because I sought out doctors who would put me on them. The endocrinologists who first treated me prescribed nothing. They also said nothing about sex, orgasms or libido, and I believed such questions belonged, more appropriately, in a psychologist’s office. There were plenty of those over the years delighted to have the discussion with me.

In Eastern traditions the pituitary is considered the third eye, the window to the soul. In Western medicine it is not given such high religious status – which probably accounts for the far-too-aggressive measures taken in my treatment: the brain surgery without a CT scan and six weeks of radiation, neither of which really worked, at least not enough to restore my lost sexuality. What wasn’t taken by the surgery was burned away in radiation; still, I was not put on hormones until I asked for them myself. Imagine premature menopause, except no one tells you what’s happening, or why, or offers any help, while all around you your generation is finding partners, mating, and you want to also; in fact, it is what you have lived for since childhood, since the death of your father, except your body doesn’t work.

New studies suggest that the tumor I had, a prolactinoma, is common to girls who suffer traumas with their fathers, an idea I find extraordinary, since my own father died a month before my fourth birthday. How could it be that such an event of childhood had the power to reach into my body, and thus follow me though a lifetime, on dates in the back seats of cars or inside a lover’s embrace? It occurred to me recently that perhaps there is a piece of anatomy in all of us, a flap of skin that merges head and heart, that was wounded by his death, torn, the way a broken heart tears you, or how women in the olden days would die of love. I picture it as a small sheath of cells between the thalamus and cerebral cortex, a kind of eardrum. In adults it vibrates when you laugh; it keeps you healthy. You pet your cat and live longer. In children it is more sensitive; babies, untouched, die. Girls who suffer traumas with their fathers develop tumors. If so, I believe I, and people like me, have suffered the first diagnosed illness of the soul.

I first learned about my simian hand when I was seven years old. Several girl friends were at my house after school – this was unusual; at the age of seven I was still depressed over my father’s death. It was hard for me to make friends. But today was different. A cluster of little girls in frothy dresses and petticoats ran through my living room, laughing, giggling, the sun was shining, and then one girl offered to read our fortunes, a party favor. She could say if we’d get married or not, the way her mother had taught her.

Of course we were frantic to know. It was late afternoon, and as light poured through my mother’s yellow curtains, the little girl proudly showed how the lines on her hand made an 'M,’ the way it was supposed to be. Then each of us in turn held out our hand for inspection, for the girl to trace the letter and give her approval. My heart beat with anticipation and hope. I had heard somewhere the statistic about there being more women than men – and in my child’s reasoning I assumed it meant some unlucky girls would just be passed over, maybe the unfeminine ones. I had seen a woman like that at my doctor’s office, with hair on her arms that was black and thick; it was too horrible to think about.

The girl moved quickly around the circle, each hand bowed over and confirmed, like a blessing in church. Then she got to me. She looked up. There was no letter, she said flatly, no 'M.’ I would not get married.

"Yes I will," I protested. A car drove by outside and I tried not to cry.

"No you won’t. See – the lines don’t make an 'M.’

She squeezed my palm together tightly for the other girls to confirm it and showed the crease – the straight line across that said nothing. I stared with them, at this hand that had betrayed me, unable to speak.

"They have to make an 'M’ for you to get married. My mother said so."

The other girls nodded assent, and clustered around me excitedly. "She’s not going to get married," they whispered, looking at me with awe.

"I am too. My mother promised."

You are going to have a wonderful loving stepfather, she would say, and then when you get older you’ll get married yourself. She would give me this promise on nights I still cried for my father, still wanted him – his touch, the smell of his body – and as she held me on her lap, smoothing my hair, and kissing me, she would say the words: "Your husband will love you so much. Just wait. You will be very happy."

The smallest girl in the circle walked up to me, and put her finger at the center of my hand. She couldn’t speak, but only peered up, her eyes wide with fear.

"Get away!" I yelled, pushing them frantically toward my front door, squeezing them out, all the ruffles and petticoats, the hot little bodies.

"Leave me alone!"

And in fact I was married briefly, two years after my operation, to a bisexual man whom I sensed would not want much of me, as together we wandered the twilight of my illness, for at the time that’s what it was. There were no prescriptions for estrogen or other medications, only weekly visits to a psychiatrist’s office to plumb the darker reaches of my subconscious. One well-meaning therapist, I remember, had me put my uterus in a chair and talk to it. Another suggested that the pain I experienced in intercourse, the natural result of having no estrogen in my body, was, instead, a traumatic response to rape. Never mind that I had never been raped; I needed to relax. I even met with Dr. Golden, the founder of the UCLA sex clinic, who responded to my story of a pituitary tumor as though I’d just read some article in a woman’s magazine about better orgasm and had cooked up the science to get an appointment with him. "Drink a glass of wine," he said. "Enjoy yourself."

The only doctor to come close to the truth was an endocrinologist in San Francisco, where I’d had my radiation treatment a few years before. He was the first person to take blood tests of my hormones, and to discover their complete absence in my body.

"Think of it like you’ve been castrated," he said. The summer in San Francisco was drawing to a close, and behind him a picture window looked out on the bay, the water suffused with pink light. I had stayed up the night before writing a letter to him, trying to put into words all the pain I had experienced, and now I was crying. He was a caring doctor. He put his arm around me as he led me back to his waiting room, but prescribed nothing. He was even a little surprised at my upset.

"I had a man with your illness once," he said. "He was impotent for ten years. It didn’t seem to phase him at all."

For most of this story I have been alone. I have not been able to share it with my best friends, not even my family. My mother, the product of a liberal Jewish upbringing, raised me in the staunch, proud belief that the power in my body was not only sacred, but also my birthright as a woman, explaining the rudiments of sex to me when I was barely five years old. "It is something you do with a person you love," she said. "It is one of the most beautiful experiences in life." And I was too ashamed to tell her the truth – that I had somehow lost that power almost as soon as I’d received it, like some precious jewel one drops in a river, and then is unable to retrieve.

I look at a picture of myself from my freshman year in college – thin, tall, a fashion model really – laughing with a self possession that seems beyond me now. I am 18, costumed in a small, lycra mini skirt, short bubble hair and earrings. We are on the lawn of Bennington College, at my older sister’s graduation; I am three years younger, and have just broken up with my first college boyfriend. I will begin my sophomore year at UCLA in the fall.

It has taken decades for me to figure out what happened, how all my dreams went wrong. Today, I could write chapters on each of the hormones. Take prolactin, a stress-induced hormone that acts like a natural tranquilizer: It make you sleepy, makes you want to nest, makes you want to be alone. Think of a nursing mother – prolactin causes the milk to flow and relaxation courses through her body. The last thing she wants is to go out and party.

Increased levels of prolactin have been found in people with Chronic Fatigue Syndrome, Epstein-Barr, even Gulf-War Syndrome, and that’s also why some people on anti-psychotic drugs lose interest in sex: They have too much prolactin. The drugs stop them from hallucinating but also destroy their sex lives. It has to do with the body’s internal mechanism of healing, and levels are highest for people with prolactin-secreting tumors, like mine. As with any potent tranquilizer, it causes a total body shut-down: In addition to the tranquilized effect of the prolactin, other hormones are repressed as well – estrogen, testosterone, progesterone, sometimes even adrenaline and growth hormone.

We think of medicine as a healing, a cure, but in some cases this never happens. Even after the diagnosis, the so-called treatment, patients are left to their own devices. For years, intercourse was unbelievably painful because the tissues of my vagina had started to disintegrate, and even after I found doctors to put me on estrogen, the mystery remained of why my libido was non-existent, why the sensation when I did have sex or masturbate was muted and distant, a thin echo of what it one was. It’s true the long-ago endocrinologist had told me to think of myself as castrated, but without the offer of a cure, maybe the truth was difficult to accept. Though I was only married for a few years, new relationships were hard to contemplate. There was too much confusion and grief every time I approached the idea of sex, and there was no help for this anywhere. "Lots of women feel so-so about sex their whole lives," I would be told by therapists, doctors, the culture at large. "Help you with your sex life? Why should I help you with your sex life? Why is that even important?"

And then one evening at the college computer lab where I taught, I found the first thread, the piece of yarn I could pull to unravel the whole know. I typed in the key words "prolactin AND sex" and waited to see what would happen. If I could just pin down the physical side of it, I reasoned, that would be a start. Naturally I wondered what would come of it, if there could actually be some answer that would reach me through the ether, and then I got a hit: an article on sex and pituitary tumors, published by an organization in Thousand Oaks, CA, which called itself the Pituitary Tumor Network Association. My God, they had an 805 area code, barely ten miles from my Silver Lake apartment. I could hardly read the article without quickly flipping to their Web site, their links, most of all the small star on the screen that caught my attention above everything else – "Contact Us." The next morning, with an hour or two to spare before my first class, I dialed the number.

"PTNA," a male voice answered, loud and enthusiastic.

"Hello, is this the pituitary organization?"

"Yes, ma’am. What can we do for you?"

"I need some information," I said, "about hormones, about the pituitary. I need your help."

Though I am a pituitary patient, the real suffering in my life has been my destroyed sex life. So this is what I need – not help with the tumor, but help understanding the other. Women who have total hysterectomies are in the same boat. Doctors do the operation, then leave them to figure out their ruined sex lives on their own.

I get my wish. Bob Knutzen, the co-founder of the organization, wants to meet me, and within the week we are sitting across from each other at Sol’s Deli in the San Fernando Valley, eating corned beef and smoke salmon and talking for hours.

Knutzen, who has the kind of pituitary tumor that creates giants, is a large, gregarious man with the affect of a steamroller, which he says is typical of agromegalics. Though no one has proven it, he’s sure the over-production of growth hormone stimulates the emotions of anger and aggression, just as prolactin can be associated with sadness and grief. Yes, prolactin has a calming effect, he says, but there’s more to it. Think of human tears. After saline, prolactin is one of the main chemical components of tears. It is the hormone that comforts us, that bonds us, that hold us. Perhaps women, who cry more easily than men, do so because they have more of the hormone.

When he talks about his subject, his eyes light on fire, the pickle in his hand shaking as he makes this point or that. Maybe his hands are a little large, his forehead, but otherwise he looks entirely normal, as I know I must look to him. Our diseases are only visible on the inside.

After his operation in two Los Angeles hospitals, Bob began the organization, with his doctor on the board of directors. Like me, he is sexually dysfunctional, and has other problems too. Top doctors and scientists around the world are now on PTNA’s board of directors, and still no one gets it, he says, his face reddening. They treat you for the tumor, fine, but then they leave you hanging. How are you supposed to live your life?

"So here’s the deal, Judy," he says. I have called myself Judith since the age of 13, since my mother married my stepfather, but coming from Bob, Judy sounds good. He stubs his index finger into the table to make his point. "How would you like a brand new computer in exchange for doing PR?"

Of course I answer yes.

"We’ve got to get this information out!" he stresses, stuffing half a corned beef sandwich into his mouth.

And more than just getting a computer, I will learn about hormones, about the pituitary, maybe even figure out how to make by body work. An hour before, while waiting for him at Sol’s Deli, I’d had brief fantasies that we would meet and fall in love, two wounded beings coming together for commiseration and love. This is typical of me – to fantasize love in any situation – but Bob has been married for decades and has a grown family. Besides, his interest is not personal. He believes that medical science will save him, if only he can encourage enough doctors to invent the right medicines.

Driving home that day, I think again of the tears and prolactin and it makes sense – how sad I was when the illness first began, how confused. The women’s movement was in full swing, I wore work boots and went on marches. When I first went to my doctor, years before his diagnosis, he puzzled a moment or two over the fact that my periods had stopped and shrugged. "Come back in six months," he said. Maybe my periods would return by then. "And if not, well, I guess you’re not the kind of woman to want children anyway," he concluded, looking over my clothes and lack of make-up, the straight forward tilt of my jaw. At the time he was the top endocrinologist at Kaiser Permanente, Los Angeles. I had seen him the year before and told him about the lactation, but he paid no attention, and would not for many years, until my mother read the Newsweek article. In the darker regions of my soul, maybe what he said was partly true. At the age of 23, I was still trying to reason why people I loved might reject me; how I could bring that on, so much pain and heartache. I can remember hating the feeling in my body, the desire for sex and love, and actually wishing it away.

Judith Dancoff, "A Merging of the Head and Heart" Creative Non-Fiction No. 21, 2003. With permission. See Rage and Reconciliation: Inspiring a Healthcare Revolution http://www.creativenonfiction.org/thejournal/store.htm

Discussion Questions

1. How do you react to the author? How do you react to her experience?
2. Reflect on your attitudes towards sexuality. Is the author's suggestion that her sexuality and desirability are wholly biologically mediated compatible with your self-examined attitudes? How important is sexuality in determining the quality of a person's life? How would your answers to these questions affect the manner in which you as a health care professional would handle a patient like the author?
3. What mistakes did the doctors make? What could they have done differently? Use the author's own coping mechanisms as a means of devising a treatment plan for her.