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In His Own Words: Living with Erectile Dysfunction (Impotence)
As told to Virginia Mansfield
Tony, who lives in London, England, just turned 50. For his birthday, his friends and family surprised him with a helicopter ride around the city. He even got to fly the helicopter. He is retired due to a serious industrial accident. Eleven years ago, Tony fell from a high-rise scaffolding. It was this accident that resulted in his impotence.
What was your first sign that something was wrong? What symptoms did you experience?
After I fell, I was in the hospital for four months recuperating. I had so many other problems—broken bones, a crushed wrist—that getting an erection was the last thing on my mind. I did notice though, that I never was waking up with an erection. Once I returned home to my wife, then it really hit me that something was wrong…I could not get an erection.
Then, your mind gets involved and it becomes a vicious cycle. I would be so concerned about it. I couldn’t stop thinking about it. I asked my wife Kathy to have a look down there, to see if anything looked funny. She let out a gasp—my entire underside was bruised. She said that every color of the rainbow was represented.
We decided to wait and let the bruising go away, but that didn’t help. I could still not get an erection.
What was the diagnosis experience like?
It was frustrating. When I brought it up to the doctor (which was not easy), he would tell me not to worry about it. After about 6 months, I transferred to another doctor closer to my home. Again, I brought it up to him. He told me the same thing…don’t worry about it. I’d like to see them not worry about it if they couldn’t get an erection.
One afternoon (about 16 months after the accident) I was getting ready to go to the doctor and Kathy asked if I was going to bring it up to him. When I said that I had tried, she offered to go with me and do the talking. That was an enormous help. It is difficult to talk about it yourself.
The doctor finally referred me to a specialist, who said I had two options. One was to give myself an injection in the penis every time I wanted to be physically intimate. The other option was a vacuum pump that you put over the penis, pump it until blood fills the penis, and then slide a ring down to the base of the penis to keep it hard for physical intimacy. The pump sounded a lot easier than sticking a needle in my penis, but it was not covered by my insurance and I could not afford it. The injections were covered, so the needle it was.
Kathy and I went home, but I could not give myself the injection. She had to do it. And it worked. We made love for the first time in 16 months and it was wonderful. However, the next time we went to do it, Kathy started crying and said that she just couldn’t give me the injection. She was so afraid she would hurt me (the injection had to be given just so). I couldn’t blame her; I couldn’t do it either. So we just held each other and cried. We may not have our love making, but we had each other.
What was your initial and then longer-term reaction to the diagnosis?
As I am sure you can imagine, I was devastated. At first, when the doctors were telling me not to worry, I tried to believe them, that it was something temporary. But after 16 months, I was completely beside myself.
How is impotence treated?
Well, this story does have a happy ending. After the injection didn’t work, I went back to the specialist. He told me about a clinical trial that was just starting. It was for a drug that you push down into your urethra prior to making love. I entered the trial and to my delight, it worked.
But, it became completely inconvenient. You have to keep the drug in the refrigerator. Our bedroom is upstairs. I would have to walk downstairs, past my daughters, get the medication, go into the bathroom and slide the cold pill into my urethra. But, I was making love with my wife again and that was what mattered.
One day I was sitting watching the TV and I got a phone call from the BBC [a broadcast network in London]. There was a clinical trial starting of Viagra, and they wanted to document a person participating in the trial. The gentleman wanted to know if I was interested. I had heard of six men dying in the States on Viagra so I said no thanks, it’s not worth it. But, the man asked if I would reconsider if they paid for a complete physical at one of the best hospitals in London. I agreed. It was from this exam that I was finally diagnosed with nerve damage, which made me a perfect candidate for Viagra.
Now I take Viagra orally about an hour before I want to make love. No refrigerator, no injection, no pill down the urethra. It has been amazing. The only down side to it all is that insurance only covers four pills a month!
Did you have to make any lifestyle or dietary changes in response to impotence?
No I really didn’t. But I will say that in those 18 months, I got very good at learning other ways to be physically intimate with Kathy.
Did you seek any type of emotional support?
This happened 11 years ago. There weren’t any organizations that I could find at that point. It has only been recently that people seem slightly more willing to talk about it. Now I am actively involved with the Impotence Society in London.
Does impotence have any impact on your family?
As I am sure you can imagine, it had a profound effect on my relationship with my wife. But she is amazing and we have really become stronger and closer because of it. At one point I was afraid she would leave if I couldn’t make love to her. And I wouldn’t have blamed her. But she informed me that although there were other things I could do that she’d leave me for, that was not one of them.
What advice would you give to anyone living with impotence?
As annoyed as it made me when the doctors told me this, I would tell someone not to worry. You can create a vicious cycle in your head. If it isn’t something medical, and it is psychological, you will only compound the problem.
I found that a lot of doctors don’t know how to treat impotence or don’t want to know about it. You have to keep pestering. Keep trying to find treatments that might work for you. And ask about clinical trials. It saved me.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.