I see these couples quite often: the man has been prescribed androgen deprivation therapy and his partner is distressed. He no longer has erections, although for some that had been a problem for years. But even then, they tell me, he at least tried occasionally. Now there is nothing. No hugs, no kisses, no hand holding, no touch. The partners are usually women, and their response to this change has been to look inward and to blame themselves. “What have I done?” they ask me. I suggest that they ask their partner that; it is not for me to speak for the man. More often than not, he has no answer. He may shrug or look away, or some look to me to provide the response.

“Do you still love me?” some women ask, with a shaking voice.

These are couples who may have been together for upwards of 40 years. They have shared so much and been everything to each other, and now, in what was billed as the “golden years,” there is doubt about that.

“Well, of course, I do …” is the usual gruff response, at times followed by a flash of anger that she could doubt him.

“Then why don’t you show me?” is the desperate response, too often followed by silence.

It’s at this point that I usually intervene and explain the role that testosterone, or in this instance, lack of testosterone plays in the display of affection and/or sexual response. Most couples seem surprised by what I tell them. “But I thought they were giving him hormones!” is a not infrequent response, in part because of the language we continue to use. When we describe treatment as “hormone therapy” or “hormones,” as I often hear in the clinic, we are contributing to their confusion.

I know that, in our clinic, information about loss of libido and erectile problems is a standard part of patient education, provided verbally when the man starts treatment. Patients are also provided with written information that I designed, in which these losses are described. But perhaps this educational material does not go far enough. Is the thought of this potential loss so difficult to imagine that when it happens, it throws the relationship off-kilter to such a degree that the couple is unable to see their way through?

Hormones are interesting. Humans are more likely to notice the absence rather the presence of these. My female patients suffer the absence of estrogen after surgical or medical menopause. Every day I listen to descriptions of vulvovaginal atrophy that challenge women who have survived breast cancer, their worst fear, and yet the consequences make sex so painful that the fear of cancer is subsumed by the fear of intercourse. The decimation of testosterone turns most men into solitary figures who never reach out to their partner in love or lust. And their partners suffer until they can stand it no longer; they come to my office seeking answers for their loneliness.

It is often difficult for partners to understand what happens to men on androgen deprivation therapy; I am not sure that the men understand it either, despite experiencing the many side effects. Men and their partners accept the hot flashes and night sweats. Many women aren’t bothered by the increased sensitivity that makes men cry at the heart-tugging commercials on television. Some are bothered by the irritability that descends on their partner; they do their best to smooth over the rough edges that cause conflict and harsh words. But the loss of touch seems to wound the most.

Women seem to internalize the loss of touch and sex and blame themselves. They look for reasons that they may be less attractive, less willing, less interesting to their partner. In couples where the man has mostly been the initiator for sex, with less or absent motivation, women are left wondering why he no longer initiates anything — and the answer seems to lie within themselves rather than with the medication.

If we inform patients and their partner about the potential for loss of libido and what this means beyond sex, then they should anticipate that loss of libido may mean not just loss of sexual interest but loss of all touch, resulting in loss of connection and emotional intimacy too. Touch is often the forerunner of sex for many couples. Loss of libido results in loss of all impetus for the man to touch his partner —
as initiation for sex or as an expression of affection. This is then interpreted as the absence of affection or attraction by the partner.

In my work with these couples, I make suggestions about the importance of communication in asking for what is needed: a hug, an affirmation of love, a hand to hold when watching TV. I encourage the partner to initiate touch more — not to wait for what has been the usual way for many years, but to reach out and touch the man so that he is reminded of what used to be. I suggest to the man that he create triggers that prompt him to hug or kiss his partner, even just a peck on the cheek. Perhaps the trigger is the start of the evening news, or after he brushes his teeth in the morning. I remind the partner that it might feel fake or forced at first, but that with time it may become routine and perhaps even feel spontaneous. I reinforce that this is not about them, although it may feel like it. And as they walk out of my office, I sigh.

Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.

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