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Dealing with Dysfunction

In a previous article, “My Treatment Choice”, I explained why the possible side effects of surgery, incontinence and erectile dysfunction, led me to choose active surveillance as my treatment plan. However, that decision changed when my PSA went up to 8.3 and I decided to take more aggressive action. I had a radical laparoscopic prostatectomy on April 16th of this year.

Steady improvements

I noted in “My Treatment Choice” that 60-75% of those who have surgery experience erectile dysfunction and 20-40% experience incontinence. Now three months into my recovery, I am experiencing both of these common side effects. Anecdotal evidence, mostly gathered from talking to other men in my support group who have had surgery, indicates that 20-40% for incontinence is a low estimate, but that the percentage for erectile dysfunction is more accurate, although a little on the low side.

I’m pleased that my incontinence situation is improving. From having almost no control after my catheter was removed, I am now down to wearing one maximum absorbency guard and one light shield per day. But I have found that rigorous exercise does sometimes result in more leakage. After a recent eight mile hike that included a thousand feet of elevation gain, I was soaked. I ’ve made one adjustment: when planning anything strenuous, if I hold off on my morning coffee (one eight-ounce cup), I leak less. I kegel every day: 200 short contractions, 100 ten second contractions. My hope is that I will soon reach the point where I can get by with just wearing a shield for most of my waking hours.

Turning my attention to my ED

Now that my incontinence is improving, my focus, both in terms of lifestyle consequences and possible solutions, is turning more toward my ED. As I wrote in “My Treatment Choice,” before surgery sexual intimacy was still an important part of married life. Even after thirty-six years and into our sixties, my wife (early 60’s) and I (late 60’s) still looked forward to “date nights” and other spontaneous intimate moments. I told my wife before surgery that, like Muhammad Ali predicted before his fight with Sonny Liston, I was going to “shock the world.” So far, the world has not been shocked.

At my first post-surgery appointment, my doctor gave me a prescription for Cialis, commonly used by men experiencing ED. After a two week triangular run-around involving my doctor’s office, the pharmacy and my Medicare supplement insurance company, the medication was approved at a significantly reduced rate. I’ve been taking a 5mg tablet daily, with no results so far. At my next appointment we’ll be discussing Plan B. In the meantime my wife and I will continue to explore intimacy that doesn’t include intercourse. It’s actually been a rewarding experience, although frustrating for both of us at times. One thing I’ve learned is that it’s possible to have an orgasm without an erection. Who would have thought.

Reminding myself to remain optimistic

The biggest challenge is remaining optimistic without having unreasonable expectations, but it’s difficult not to feel a sense of loss. A kind of grieving can set in at times. I’ve lost something I might never have again. Yes, it happens to almost all men if they live long enough, but to have the ability one day and lose it the next is a different story, even when you’ve kind of prepared yourself for it. But I keep reminding myself of the good news: I don’t have cancer in my body, and I’m not spending a lot of time thinking about cancer, which was definitely taking its toll on my marriage and on our personal life. It’s hard to be present when preoccupied with thoughts of a deadly disease.

I’ve written before about the difference between aging and getting old. I’ll be seventy in a couple of months, and coupled with prostate cancer surgery and its side effects, it would be easy to think I’ve crossed the line into getting old. But as long as I stay active and physically fit, and maintain a positive attitude, I’m just like everyone else: aging, one day at a time. If I act and think that way, then incontinence and erectile dysfunction are quality problems. And they won’t kill me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • CharlesBurt
    4 months ago

    Good write up, Will. I was diagnosed in 2001 after my PSA rose abruptly from 3.1 to 8.8. I attended a support group for 6 months seeking options to surgery. I spoke with many people to took the options (mostly radiation of some form) and after a few years were very displeased. (I belonged to a large support group here in Houston). Eventually I chose surgery. Once recovered (about 6 months) I began seeking options to obtain erections. Viagra, Cialis neither of which left me with sustainable erections, shots (which caused enormous pain with my erection). After several years I convinced myself to inquire into surgery even though the thought scared me to death. My partner said “Whatever you choose I’ll still love you.” I also spoke to a young man (35, I was in my 60s) when had type 1 diabetes and couldn’t get sustainable erections until he had the implant. Encouraged, I went through the surgery. After the 6 week period of waiting I tried it out and discovered that after 5 years of near impotence, I could get a firm erection. Fortunately my Urologist had a great sense of humor and was very matter of fact about it all. Eventually this led to a very satisfying sex live with my spouse and I. After a few years of depression, which I’d never had before or afterward, life is great. Incidentally, I became a “model” for my physician (at his request) for his patients who were considering an implant. I talk to them and if they request, give a quick demonstration. A little irony is that I have less inhibitions about my implant than I did my penis when it was whole. About a year after surgery I began to leak and also wear a Shield when out and about. Hey guys, feel free to ask me anything and I’ll try to respond honestly.

  • Will Jones moderator author
    1 year ago

    Thank you, James, for your response. I will pursue other options if the current treatment ends up not working. Glad to hear that you’re cancer free, and good luck with the higher strength injections. My wife, like yours has supported you, has given me great support. We enjoy the intimacy that’s currently available to us and hope I’ll eventually regain full function. In the meantime, it’s good to be cancer free.

  • jamessnell
    1 year ago

    HI Will,
    Glad to hear that you are free of Cancer, i am a similar age to you and are Cancer free..
    NO pills worked for me and i have moved onto injections, had some results but not great, so moved up to higher strength, not great either and next month moving to a higher strength.
    If this dosent work looking at Penile implant early in 2019, we both would like to enjoy a sex life and my wife has been an amazing support, guess after 44 years what could you expect, so dont give up, there are other alternatives.
    Jim

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