Peyronie's Disease: A Family Disease

The McKown’s Share Intimate Details of Their Long-Term Experience with Peyronie’s Disease

When Mike and Marti McKown entered their midlife years, they were still enjoying a very active sex life. That all changed though, when Mike’s penis began taking on an extreme curve. Intercourse went from uncomfortable to painful, so putting modesty to the side; he took the problem to his family doctor. Mike had fallen victim to peyronies disease or curvature of the penis.

The decision to seek medical advice was the first leg of a nightmarish journey that included misdiagnosis, misinformation, and physical disfigurement at the hands of inexperienced medical professionals.

Now, six years later, with a penis pump implant, a penis that’s a fraction of its original size, and immeasurable psychological damage to both he and his wife, Mike has become a poster victim for all that can go wrong with misunderstood disorders such as peyronies.

Jim: What do you think was the cause of your disorder?

Mike: I really don’t know. Just one day it showed up. I didn’t even notice at first, and then when it became obvious I went to my family doctor. She sent me to another doctor who told me to go on home and take vitamin E, there’s nothing we can do about it.

Marti: Essentially for my part, I had noticed a curvature and I said mike you know you really need to see a doctor about this. At first the doctor said just take 1500 mg of vitamin E. So I got on the internet and couldn’t really find any information on it at all. The one site I did find basically said there’s no cure, no treatment, it will continue to get worse, sex will become impossible and the patient will become impotent. I said ‘oh my god,’ because we had always had a very active sex life and I wasn’t about to give it up. It was horrifying. He was fifty-seven and I was fifty-five.

Jim: So After that did things get worse?

Mike: Yea, it continued to get worse and the vitamin E was doing nothing. So I got another doctor who sent me to an urologist.

Jim: Was it that urologist that recommended the first of the three surgeries you went through?

Mike: No, we had switched insurance companies so I went to a new family doctor who was a woman who was very meticulous. If there was something I didn’t understand, she’d say let’s get an x-ray or whatever it took to understand what was going on. So she sent me to an urologist who said the only thing we can do is an implant. I didn’t know there were other ways to treat it so I said OK.

Marti: From the time when we first noticed the curvature, to the time we got new insurance and a new doctor was only about seven months, and the curvature was getting worse and there was pain upon ejaculation.

Jim: Was there an inability to get an erection?

Mike: No, but of course having the pain slowed the sex life down because it didn’t feel good anymore.

Marti: There was some difficulty on my part with penetration. It wasn’t comfortable. Mike was still in the inflammatory stage. He was still having pain. He had no erectile quality problems and it didn’t make it impossible to have intercourse, it was just uncomfortable. Those are key things when you’re dealing with peyronies because today we know that in the inflammatory phase, an implant is the last thing you want to do. You have to stabilize. He went to the doctor’s office and on the first visit he said implant. He sent him home with some Viagra, which he didn’t need, and said take a picture, which we did. On the second visit the doctor said Mike had quite a curve.

Mike:The doctor didn’t even have any knowledge of anything other than the implant. He just said ‘there are three different kinds of implants, which one do you want?’

Jim: Was the implant surgery the first botched operation and what was the outcome of this first surgery?

Mike: Yes. He did the implant and it was worse than when it started. It was going sideways in different places and it just wasn’t natural. The first thing that should have made me suspicious was that he couldn’t do the implant until a representative from the implant company came up to oversee the operation.

Marti: I found out that was pretty standard operating procedures, but before Mike was even in recovery, the doctor came out and said, ‘well I put it in, but I had a real problem with it. I really had to push on it to get it in” I asked why and he said it was because the plaque was so solid, so calcified. The thing is if he knew what he was doing he would have incised that area anyway. That’s why I say this guy didn’t know what he was doing.

Mike:I asked him prior to the surgery, am I going to lose any size and he said ‘maybe a half an inch at the most in length, but in circumference, it shouldn’t make any difference. Well he cut it down so that the diameter was about half what it was before and I lost about two inches in length.

Jim: What about the doctors promise of not losing size?

Mike: He said ‘well you’re getting older and when you get older it tends to get smaller.’ I said no, it wasn’t small before you did this.

Marti: Mike Immediately started having problems with the pumping mechanism. It wouldn’t hold the fluid.

Mike: At first it would start going down slower, then it started pumping itself up.

Marti: Mike started noticing a bulge in his abdomen where the reservoir was implanted. So he went back to the doctor and the reservoir had herniated. So they had to go back in and repair it.

Jim: Overall, after all the surgeries, are you better off than when you first developed peyronies?

Mike: I’m really better off now, because I don’t have the curvature.

Jim: Are there some positions that are uncomfortable or those that are impossible for both of you to enjoy?

Mike: For me there’s just the impossibility of some of the positions we used to have. The rest of them are okay. For some positions, I can’t get in far enough to stay in. It keeps falling out because of the shortness.

Jim: Have you used any devices, creams, or other remedies, such as traction devices?

Mike: No

Jim: Is there any premature ejaculation or inability to get an erection?

Mike: No, there’s no premature ejaculation, and there’s no problem getting an erection, because I make it mechanically. It won’t erect by itself.

Marti: The doctor didn’t give Mike any information about the device. We found out later that post-operatively, you have to pump it up and leave it up for a while, and then you take it down. He never had us in his office as a couple. Before Mike got the implant we could fondle each other for foreplay, but after the operation I had to make sure I was squeezing the right ball in the mechanism.

Mike: There are three balls down there now and if you hit the wrong one you’ll know about it.

Marti: Yea he’ll hit a high C! You don’t realize that if a woman has long fingernails, it’s extremely uncomfortable for the guy. Without proper education from the physician as a couple, you lose a lot. For instance, we talked about the physical effects of the surgery, but we didn’t talk about what would actually happen to the relationship.

Jim: There no follow up as to the physical / emotional repercussions of the surgery & problems associated with the pumping device?

Marti: No, there was no counseling offered. There was no explanation of what was going to happen afterward; it was jus like ‘here have an implant.’ There was no information offered on peyronies disease. The reservoir herniated twice, and the doctor said it’s because you have sleep apnea, causing you to cough at night and that’s why this keeps happening and I said ‘no!’ The doctor knew nothing!

Jim: What is the name of the organization you’ve formed, and what have you accomplished through the organization?

Marti: It’s the Association of Peyronies Disease Advocates (APDA). Essentially APDA came about because Mike had gone into a clinical depression. He wouldn’t talk about his condition, he wouldn’t do anything about it, and I said something’s wrong here this doesn’t make sense. I happen to get on line, and put in peyronies. I found that biotechnologies has a forum called the BTC and it’s for peyronies disease. So I went on, wrote Mike’s story on there and I said ‘is this normal?’ I found out this is not the way it’s supposed to be, he never should have had surgery in the beginning. I also found out there were a lot of other men who were trying to get something done about peyronies disease because nobody could find doctors. They wanted to know what they could do. I had some experience in non-profit organization; I had been in non-profit for thirty years. So we decided to become a non-profit in information, education and referral, build a website, have an information room, and get a physicians referral list so these men wouldn’t have to go through what we did.

Jim: Now that you started this organization what kind of involvement do you have from other people?

Marti: A lot. We’re probably the first virtual non-profit that’s ever done this kind of thing. We still have only five people working on this, but it’s all done over the internet. People can send in questions and I route that to the right person. It’s been a step-by-step process. Even though it strikes ten percent of the male population, Peyronies disease is still listed as a rare disorder because it only affects under 200,000 people. We took a survey, which is probably the largest random survey of its type ever done over the internet. We had over 450 respondents and the outcome was that psychologically, medically, and emotionally, the cost to physicians, insurance companies and related industries is about 54 billion dollars per year.

Mike:A friend of mine passed away from congestive heart failure, and after he died his wife got medial records and discovered he had been diagnosed with peyronies disease for two years. He never told her, never talked about it and their sex life collapsed. He didn’t talk to anybody about it because he didn’t know about it. He didn’t understand it and he didn’t know what to do about it.

Jim: So here he lived the last couple of his years thinking he couldn’t even communicate this problem to his own wife?

Marti: Well the psychological affect of this is the worse because most men will cut their wives off. They will not talk about it because it’s a core gender issue. Even in our relationship Mike refused to talk about it and went into a deep depression.

Mike: It’s a family disease. When you stop having relations with your wife she goes into depression and the kids feel the depression and it affects the whole family.