Returning to Intimacy after Prostate Cancer Therapy
Ralph and Barbara Alterowitz
Authors, Lecturers, and Prostate Cancer Activists
(A summary of the Alterowitzs’ presentation to the WRAMC Us TOO on February 1, 2006)
I am Ralph Alterowitz. Barbara and I are pleased to be with you tonight. Thank you for coming. You are here because you want to have a good love life. I just talked to one man whose wife is not here tonight, and I asked him why not. He said, “Well, I am just exploring this subject and I don’t want to go too far, too fast.” He is a very cautious guy, but that’s OK, too. For those of you who are here with your spouse or significant other, you might start off by sitting closer together. I realize that the armrest presents a problem! At one of our recent talks, I learned afterwards that one of the couples in attendance was “making out” in the back row! Good for them! So if you are in the mood, there is plenty of room in the back row!
People come to our presentations for various reasons. We usually find that the men come to learn about the several medications and other aids to intimacy. Women tend to come because they want to hear about the tender kind of things--the cuddling, the touching, the togetherness. So are there differences between the two partners in coping with impotence associated with prostate cancer therapy? Well, yes, and you are going to hear about both sides tonight! Let’s be direct-- erections are not enough! We men here tonight are long past the time when we could glance at a pretty face, a nice figure, and be immediately ready for intimacy. So, men, we need both the physical side and the emotional, sensitive side. Tonight we will try to give you the entire package. But let me repeat what I just said--erections alone are not going to be enough!
How did we get involved in this counseling activity? We got involved because Barbara and I had to work on our own sexuality when I had a radical prostatectomy ten years ago and its aftermath. To be frank, my “plumbing” just was not working. I could not get an erection. Despite many wonderful years of direct and intimate communications, I found myself holding back. I didn’t talk about the situation with her because, after all, it was an immense blow to me. I started thinking, am I still a man? Well, what does it mean to be a man? Am I just an erection? Will she still love me as she did before? This became a fundamental issue. Barbara and I did a lot of soulsearching and we reached a remarkable conclusion. I am not my erection! Big surprise! An erection did not define me as a man. We could still have our strong, on-going sexual relationship with or without it. It came down to this-- the essence of our intimate relationship was not that of sex for the sake of sex, but rather it was a matter of expressing our love and feelings for each other with our bodies.
OK, Ralph, my turn. Early on, our search for information was frustrating because there was very little available for the lay person. And frankly, doctors don’t prepare patients for the aftermath of prostate cancer therapy when it comes to intimacy. Fortunately Ralph is a zoologist by training, so he understood the medical literature and could translate it intelligently. More than anything, what really helped us was to change our old way of thinking about loving and sex. The old way just didn’t work anymore. For couples experiencing erectile dysfunction it is normal to want the erection back. You want the experience to be like it used to be because you thought a good erection equaled good sex. We learned to turn the proposition around. We changed the focus from getting an erection to how can we have good sex. And to our delight and surprise, we found that we could have great sex without the vaunted erection.
THE “LOVING PIE”
Now we would like to share what we have learned together in our personal journey-- how to get erections back, but even more important, how to have great sex with or without erections. Although some will not admit it, most men who have been treated for prostate cancer are going to experience some level of impotence. Nevertheless, a loving couple can still have the intimacy they both seek. You can make love with or without aids or medications because both men and women can experience sexual pleasure and even orgasms without penetration. The key to having great satisfying, sensual sex is to be a team, working to be creative and willing to explore new approaches together. Good loving is a whole-body experience, the physical expression of emotional intimacy. We like to compare it to a pie, the “loving pie.” The loving pie consists of three parts. The crust, the element that holds everything together, is the quality of the relationship between the partners. If the crust is ill-prepared, the pie will fall apart and the loving will be no good. Then come the fillings. The key ingredient of the filling is communication, getting reacquainted, getting to know each other sexually and otherwise all over again. And then there are the toppings--the mechanical aids and medications. More about this construct in a few moments. If you watch the commercials, pharmaceutical companies would have us believe that the toppings are all that really matter. But we know better. We know that you need everything working together to make the loving pie--the crust, the fillings and the toppings carefully prepared and served, so to speak. This is our agenda for tonight as we talk about those three elements of the loving pie. But before we do that, let’s review the basic facts about impotence and sex. Back to you, Ralph.
IMPOTENCE AND SEX
Thanks, Barbara. Let’s start with the reality of prostate cancer. Many of you know this, but let me refresh your memory. First, impotence or erectile dysfunction is fairly common. At least 70% of the men who have primary therapy for the disease will experience impotence to some degree. For men selecting the radical prostatectomy, ED occurs immediately after surgery, while men choosing radiation therapy likely will experience it later. It is also interesting to note that at least 31% of all men encounter potency problems sooner or later. So we with prostate cancer are not alone!
Looking at this slide, it is clear why therapy for prostate cancer affects potency, notwithstanding what you may have read about the success rates of the various treatment options. The nerve system in the prostatic area is not like a telephone cable. Instead, think of it more like a spider web on and around the prostate. So, even if a surgeon spared a large nerve, like one of these trunks here, other smaller ones are going to be cut, disrupting the intricate relationships within the neurovascular network. Some doctors may cite impressive results in preserving potency, but what goes unsaid is that these often are based on medicinally assisted erections. As I noted earlier, potency after radiation declines gradually, but when you get to the point about four years after radiation therapy, about 70% of the men also have encountered erectile dysfunction. Let me mention hormonal therapy. About 70 to 75% of men on hormones will have potency problems as well as sharply reduced libido. This same fact applies to men who choose orchiectomy (surgical removal of the testicles).
It’s possible to have an orgasm without an erection, but not without arousal. There is a neurovascular channel affecting erections and another affecting arousal and orgasm-- two different ones that are not dependent on the other. Of course, recovering potency after primary therapy is affected by other factors. For example, recovery is more likely for younger men who were potent pre-therapy. That stands to reason because they are younger, diet has had less negative impact on them, they likely have fewer accompanying medical conditions, and they are much more likely to exercise, which brings me to my next point.
EXERCISE, STRESS, AND POTENCY
Exercise is a key to the recovery and maintenance of potency. When you don’t exercise, you get overweight, so you feel less attractive, you are less attractive, and your partner is not as stimulated. Furthermore, reasonably vigorous exercise increases sexual stimulation because blood goes to the erogenous zones and that helps maintain the viability of the penis. So how much exercise is necessary? Strive to achieve the endurance for at least a daily two-mile walk regimen. That burns approximately 200 calories. Let me tell you that when you have sex, the energy expenditure is about the equivalent of a five-mile walk. So think of that daily walk as sexercise! Furthermore, thirty minutes of daily exercise can reduce the rate of dying from prostate cancer by 70%. That alone should be a good motivator for regular exercise.
Don’t forget that sexual readjustment after prostate cancer therapy is stressful. There are stress scales showing the degree of stress associated with certain life events such as divorce, moving to a new location, getting married, loss of a loved one, etc. Research has found that sexual readjustment ranks at 39 on the stress scale--about the equivalent of getting fired and about half the stress of going through a divorce. So it is not an insignificant kind of event. Get ready for it by being in shape.
Now we get down to the final point. People who make love live longer and are happier. Sex does have a healthful component to it. So have your pie (loving pie, that is!) and eat it too, even with erectile dysfunction.
ESCAPING THE RUT
As Barbara pointed out earlier, you need the good crust, the fillings, and the toppings. But there is a common problem that you must address. Even the best of marriages can have a stale aspect to them. Over time you get into this rut where the relationship becomes routine. Everything is the same, day in and day out, and so it is sex. The sex is perfunctory, nothing changes, and interest may diminish. It’s like playing the same old card game over and over again. I got a call from a client today, and he said, “My wife doesn’t relate like she used to. She is always “busy” doing her own thing. She avoids closeness and my displays of affection. We are just living in the same house.” Sound familiar? Is this the case with you? If it is, you need to get out of the “RUT” of a Routine, Unappreciated, and Tired relationship. You need to move to what we term a “CREST” relationship emphasizing Creativity, Respect, Excitement, Sensitivity and Togetherness. What is Creativity? It’s thinking of new things to do, new ways of relating to each other, and rebuilding the intimacy between the partners. Respect-- for each other, for who they are, what they are, what they do, and their values. Excitement--it’s waking up in the morning expecting a great day; there is a little bit of mystery in the day, a little bit of anticipation. That’s what makes for excitement and enhanced relationship between the partners. Sensitivity-- a concern for other’s feelings, an understanding of their needs. Togetherness--the enjoyment of each other’s company, doing things together, and acknowledgment of a need for individual personal time. The interesting thing is you can’t isolate one part of the marriage from all the others. You can’t stay upset with your partner all day and then expect to have romance that evening. So how do you get to a CREST relationship? You need to create an overall environment of love. As the song goes-- little things mean a lot--a frequent smile, an unsolicited compliment, an unexpected offer to help, a gentle touch.
Speaking of a gentle touch, the AARP recently had a remarkable article about touching. Did you know that the skin is the largest sex organ! Touching is simply essential. A baby’s emotional development can be stunted if they are not touched and held often enough. Why should it be different for us grown-ups? A reassuring touch can help reduce stress and even improve the immune system. Research has identified a condition known as touch deprivation and it is prevalent in the United States. Couples in Puerto Rico and France exchange touches at a much higher rate than do couples here at home.
Enhance your relationship by doing things you both enjoy doing together. Like taking walks, riding bikes, taking dance lessons, swimming, yoga instruction, and going to the gym. Perhaps you have forgotten some of these togetherness activities from the “good old days.” Try this--tell your partner you want to find more ways of doing things together, then you each prepare a list to compare. You may be pleasantly surprised! OK, Barbara, your turn.
Now the hardest part of staying connected, especially when facing a crisis like sudden erectile dysfunction, is how do you talk about it. And that brings us to that important part of the filling-- communication. When erectile dysfunction happens it’s usually an immediate identity crisis for the man. It is a very big job for the couple to resolve that crisis. The typical pattern is that the woman won’t say anything because she doesn’t want to embarrass him, hoping he’ll broach the subject sooner or later. Well, guess what! He never does! So now they have an important aspect of their life that they can’t talk about, but they receive frequent reminders about it. They walk down the street and see people in love, they go a romantic movie, they see people touching and kissing--it’s that thing that they avoid talking about. So the little island of silence grows bigger. In many marriages this conspiracy of silence between the partners can have tragic results. I remember a man in one support group who said that for eleven years he and his wife had not touched and had not talked about the problem. Ever since his prostate cancer surgery they had not discussed their feelings toward sexuality and so they simply lost that aspect of their life. That is a tragedy. In assisting couples, we have heard from so many that only when they had the guts to address the issue head-on did they start getting the relationship back on track. One common problem we often see is that men feel “this is my problem and I’ve got to solve it.” I remember well one man who finally realized that his wife felt rejected, hurt and shut out. She was as impacted by this problem as he was, but he never saw it that way. Only when he became aware could they cooperate in solving the problem. Many men feel that having an erection is the only way to please their partners. If they would only ask the question they will likely be in for a pleasant surprise. Why? Because an erection is not necessary to sexually satisfy a woman. The organ that causes her sexual pleasure is external. So, Mother Nature is on your side!
(Ralph) Let’s say you’ve had a primary therapy and your relationship is being affected by its side effect of ED. Are you both ready to sit down for a frank discussion of the matter? Are you both ready to resume the physical aspects of your relationship? Good! Review the literature to be aware of the mechanical and medicinal means at your disposal. If you decide to try the medications, have realistic expectations about them. For example, if Viagra was effective only for only 60% of men in the clinical trial, it is never going to be anywhere near 100% effective for prostate cancer survivors. So when you both agree to try mechanical or medicinal aids, have realistic expectations of their efficacy.
(Barbara) Get reacquainted. Take the time to touch and to talk, learning about each other all over again, especially about sexuality. What turns you on, and just as important, what turns you off. Many men are very turned on by the visual aspects of sex, while many women respond more to the romantic and tactile aspects. However, this common wisdom may not apply to your relationship. So the partners must make the effort to understand each other sexually. Good loving is a lot more than the physical act of intercourse; good loving in a long term relationship is based on good communications. Tell and show each other what you want and what you like. Women should avoid the trap that many fall into. They think the best way to support their husbands is to assure them that “its OK, I don’t miss sex that much anyway.” Now that’s a turn-off if there ever was one! A more constructive approach is to work together to find ways to give each other sexual pleasure. Relearning loving together is what we are really talking about here. It means touching a lot, talking a lot, and learning about your own anatomy and your partner’s anatomy, not just in the genital area, but all over the body because good sex is a whole body experience. Do whatever feels comfortable to you as a couple. Part of getting reacquainted is also understanding how the other person’s chemistry works. For example, the woman’s chemical processes are such that in her mind the sex act begins long before penetration!
Age does not have to be a limitation if you are in reasonable health. We can have lifelong interest in sex and enjoy sexual relations and sexual pleasure throughout our lives. Partners also get more in sync as they get older. Remember when we were young? The man goes “one, two, three-- OK, I’m done.” The woman goes “Wait!-- “55, 56, 57, 58.” As we get older the testosterone levels get closer together. In men the testosterone goes down, and in women it actually rises proportionally. So the men slow down their arousal as the women speed up. What a wonderful gift from Mother Nature that we both can become more highly aroused as we enjoy longer foreplay. And we should use foreplay in quotation marks here because “foreplay” oftentimes can actually be the whole event, wonderful and satisfying in itself. We encourage everyone to learn to make love in a new way, to take the emphasis off the intercourse. Just focus on the fun on the way there, because the key to good sex is to accept those changes that come with time and with illness, and to make the changes work for you.
Change. What else does it mean? Well, change the place where you make love. It doesn’t have to be in the bedroom on the left side of the bed or the foot of the bed. It could be almost any place else. Change the way and the places you touch. We talked about that. Change the pace. You don’t have to rush into it. Take some time. Change the time you make love. As you get older your body clock changes. Don’t start making love at eleven o’clock at night when you are already falling asleep! Do it at six! Do it before dinner! Be spontaneous! Do it any other time. The point is make love anytime, whenever, wherever, however you can.
Here are some other suggestions that may work for you. There are also some common sense “home remedies” that we would like to describe quickly. First, the penis and vagina must be well lubricated. There are some well-known products like KY Jelly and Astroglide. Use gravity to your advantage to maintain the blood flow to the penis. If you have an erection, or even a partial erection, stand on the side of the bed with your partner laying on the bed. Or make love in the missionary position to help maintain the erection. You even can use a partial penetration because the penis is somewhat stuffable in that state. And given the female anatomy, that condition feels very pleasurable to a woman. The partner plays a big role in rebuilding the man’s confidence. Her reaction to the suggestion to make love, her support to using medications and aids, and the reaction to leaks are important. Let me talk about leaks for a minute. Unfortunately, incontinence is another frequent side effect of prostate cancer treatment. There are some ways to manage that relatively easily if the man has a slight case of stress incontinence. One is to void completely before making love, but keep some tissue or a towel handy for accidents. Use herbal remedies with caution. There is a lot of marketing hype about them with unproven claims.
MEDICATIONS AND AIDS
Now we’ve talked a lot about making love without an erection or with a partial erection, we do want to talk to you also about the medications and aids that are available to help produce erections. These are the “toppings” we mentioned earlier.
Let me very briefly mention the various medicinal and mechanical aids that may assist men in coping with ED. Remember that (1) first and foremost, the advice of your doctor is paramount in helping you decide what aid to use for your circumstances; (2) some aids may not appeal to you aesthetically; (3) all of them have their own pluses and minuses as to efficacy and ease of use; (4) the drugs and devices help you gain an erection, but stimulation is necessary to achieve orgasm. So do your homework and consult with your doctor about options available and suitable for you.
No doubt you are already aware of the oral medications--Viagra, Levitra, and Cialis. There are three items I want to mention here. First, there are disputed reports that Viagra (and perhaps the others) has resulted in blindness in a very small number of cases; second, some men taking cardiac medications are vulnerable to dangerously reduced blood pressure if they should use these oral medications; third, they do not work automatically--arousal is required!
Then there is the intraurethral suppository MUSE. The user inserts a plastic delivery device into the urethra to place a small pellet of alprostadil. Some men find it more effective when combined with a constrictive device that is also available from the manufacturer. Caverject uses a needle to inject alprostadil directly into the penis. Although some may find it difficult to self-inject, Caverject gets high marks for effectiveness.
The penile splint is a condom-like sheath placed over a flaccid penis to provide rigidity to facilitate penetration. There are a number of vacuum erection devices available with or without prescription. They can be effective, although some men find them cumbersome. Those obtained by prescription are more likely to be covered by medical insurance. Penile implants have become very reliable and the surgical procedures are much improved. Obviously, they involve the risks associated with any surgery. Users report a high degree of satisfaction with the penile implant. An effective topical gel would be a great breakthrough, but we must await the outcome of the research effort.
Penile rehabilitation after radical prostatectomy is a topic you will be reading more about. Research has found that early initiation of measures to restore blood flow to the penis will help in the recovery of erectile capability. Doctors now recommend injection therapy or oral medications within three to six weeks of the surgery to stimulate the blood flow to the penis to help prevent penile atrophy and fibrosis.
Are both of you motivated to resume loving and to take the necessary steps to make it a reality? We hope we have shown you tonight some ways to do this with or without erections. Now, let’s summarize some key points. Number one, impotence doesn’t prevent us from having a good love life, and you don’t need intercourse to have sexual pleasure and orgasms. If you decide to use the available medications and aids, have realistic expectations. They won’t always work perfectly. Keep trying until you find what works for both of you. Next, relearn how to make love and have sensual sex for the sheer pleasure of being together. And always remember that sex is actually an thirteen-letter word—
(Editor’s Note: Ralph and Barbara Alterowitz are recognized authors, certified sex counselors and prostate cancer activists. Their acclaimed book Intimacy with Impotence: The Couple’s Guide to Better Sex After Prostate Disease (2004, Da Capo Press) expands in considerable detail on the concepts summarized above. It is available at <http://www.renewintimacy.org>.)