Don Cummings, an LA-based playwright, discusses Peyronie’s Disease and his new book “Bent But Not Broken”. Peyronie’s Disease is a condition in which the development of fibrous scar tissue inside the penis causes curved, painful erections.
Don Cummings’ essays have appeared in various literary journals including Post Road Magazine and Epiphany, which published an excerpt of this book. He often performs his stories at venues around the country including Comedy Central’s Sit ‘n Spin, HBO Workspace, Brooklyn Reading Works, Tell It!, Personal Space and True Story. His many plays have been produced and read on both coasts, performed by committed artists, curious interlopers and Meryl Streep at The Public Theater. Don has appeared on television and in film, but more often on stage. A graduate of Tufts University with a degree in biology, and The Neighborhood Playhouse School of the Theatre, he lives in Los Angeles with his husband.
Neal Howard: Hello and welcome to the program. I’m your host Neal Howard here on Health
Professional Radio, glad that you could join us once again. We’re going to talk to a guest this morning, have a brief conversation with Mr. Don Cummings. He’s joined us here on the program to talk about Peyronie’s disease in his new book ‘Bent But Not Broken.’ It talks about the disease. Thank you for joining us on the program today Don. A bit of background about yourself if you would.
Don Cummings: Oh sure, thanks for having me. This is Don Cummings, I’m a writer, I’ve often been a playwright and I’ve written some movies and books of course and essays and I contracted or came down with Peyronie’s disease and I decided it would be probably a pretty good idea to write a book about it to help other people who also come down with it. So my background is I have a biology degree from Tufts University, I was a pre-medical student but then I actually became an actor and I was an actor for many years in New York and Hollywood. But writing sort of was always kind of running along adjacent with acting and the writing took over and I figured who better but me who has been a writer for a long time to flip this story down on paper and get it out there to help other people so that’s basically my story. I live in Los Angeles, I’m from New York originally and I kind of go back and forth quite a bit but I’m pretty much living near Hollywood with my husband and my poodle.
Neal: Very, very busy. As most of our audience are healthcare professionals in some capacity or another, what is Peyronie’s disease for those of us who may have never heard of it or just barely familiar with it? What is Peyronie’s Disease?
Don: Sure. Peyronie’s disease is an inflammation of tissue that ultimately causes scar tissue to invade a certain area of the penis. They believe it can happen from some sort of injury which most people don’t really have a memory of an injury or just repeated use of certain area but basically a certain part of the penis will get inflamed and then in that area you will get naturally-occurring fibrin which is you know throughout our entire bodies which basically makes up scar tissue and it builds up between the corpora cavernosa which are the two erectile tubes, the two upper erectile tubes in the penis and sandwiches between there and the tunica albuginea which is a reptilian like skin that covers the outer parts of those two, so it sandwiches right in between those two areas and then you don’t notice that when you are flaccid but when you become erect, the area because there’s a constriction the scar tissue causes this constriction and there’s pain in the early part when you first sort of noticed Peyronie’s Disease and notice that you’re contracting it. There’s also some pain involved, this causes pain only during erection but it still causes pain and then over time whether you are treated or not, over time the pain will go away but the plaque can calcify. I guess many doctors and other health professionals would know that over time if scar tissue is left alone, calcium molecules will get in there and be plaque will become very hardened so it’s important to go after Peyronie’s Disease early if you get it.
Neal: Now you mentioned early in our conversation injuries. Are we talking smashing, bending, cutting? Is there a specific type of injury? I’m assuming that not all injuries to the penis cause scar tissue or am I incorrect in that assumption?
Don: No, no, no, you’re correct. It really depends. My doctor for instance thinks that this is a genetic predisposition for people who develop scar tissue more readily than others and so it was even noticed that if you develop Peyronie’s Disease, you probably have a greater chance of developing I can’t pronounce it correctly but it’s Dupuytren’s Contracture which is where you get scar tissue at the base of usually the ring finger or your pinkie and your finger starts being pulled towards your hand because of the constriction from that scar tissue or other scar tissue in the body. But no, you don’t necessarily have to first of all, you don’t need to be injured in order to get Peyronie’s Disease. As they said it can be just caused from just repeated use your penis maybe in a certain way or you could also yeah, receive I guess some kind of injury like you know get bent too difficult in a difficult manner while you’re having sex with someone and that could or could not lead to Peyronie’s Disease depending on just how you are set up genetically. They don’t know exactly why some people develop this scar tissue response and why other people don’t but they figure it kind of has to be a genetic component since the variation mirrors that type of thing, that it must be genetic like it would mirror any other kind of genetic problem in a bell curve.
Neal: Does a man have to be sexually active? If it happens early in life you say you don’t remember an injury, maybe playing sports? Can it make intimacy impossible?
Don: Well it depends on how bad it gets. Like for instance the Peyronie’s Disease, when it happened to me I had a bend to the right toward the for the distal end, toward the head of my penis I went to the right and then eventually actually started leading to the left and only … work so mine wasn’t soo bad so I like to continue to have sex but some people they’ll end up where or they’ll end up where or begin with or end up with like a 90 degree turn. I mean really or even I’ve heard of almost like a corkscrew turn. You can actually get scar tissue in more than one location and end up with distortion in three different planes. So yes, it can lead to and because just because of the simple shape of things, it can lead to an inability to have sex but also there’s a diminishing of erection that can happen too because the scar tissue that starts grabbing can make it so that your corpora cavernosa cannot fully fill with blood like it used to. So yes, it can lead to profound sexual dysfunction and the problem with Peyronie’s Disease is once you get it you really don’t know how far it’s going to progress and you don’t know how you are going to end up at the end. That’s why there ends up being a very strong psychological component obviously and that’s because it’s very distressing because you don’t know where you’re going to land, it either sort of calms down on its own or if you are treated and I know a guy would like to keep repeating that it’s important to get treated early because the earlier, the better.
Neal: Does it eliminate, diminish sensitivity in any way or are we just talking about a disfiguring of the shaft and other areas itself?
Don: No, the sensitivity remains the same. I mean it’s the kind of thing like I guess in a worst-case scenario where if your penis is shaped such or the pain is such that usually is the pain goes away eventually, usually after 18 months the pain will go away because the inflammation period has calmed down. But you also feel sensation so you could have some kind of sex but not necessarily be able to penetrate so. As we know there’s other ways to have sex or feel pleasure so yeah that happens to some men and they can no longer have any kind of intercourse so it remains manipulation by hands and other things so that can happen.
Neal: You stress early treatment and you also mentioned the pain going away in about 18 months. Is this something I guess in your experience, did it take 18 months to get treated? Were you readily prepared to talk about it to your healthcare provider or anyone? And what is this treatment that we should get early if we find ourselves dealing with Peyronie’s?
Don: Sure. I mean for me, yeah I was ready to go in quickly. I went and saw a doctor within two months of discovering I had this problem and I only waited that long as there was an insurance issue I was clearing up in a health insurance thing. But yeah, within two months and then I was treated for about a year so for me it was 14 months but the doctor mentioned it goes up to 18 months. You have what is called the acute phase at first and that’s when this inflammation process is happening in the scar tissue is laying itself down and getting worse and that’s really the most painful part and my doctor told me and I found this to be true. He said “In almost all are all Peyronie’s sufferers, the pain goes away up to 18 months but afterwards you are left with the scar tissue.” For me the treatment was first they do an erection assessment and they check to see if you actually have Peyronie’s Disease and that’s pretty quick because they do it quickly with ultrasound and that was diagnosed very quickly with me and then but the treatments for me were a mixture of verapamil and saline solution. The verapamil is an you know off-label blood-pressure medication for this thing, for this treatment and it’s mixed with saline solution and they go under your skin and they go in there. It gets numb with Lidocaine and then they go in there with the needle or the small gauge needle and they break up the scar tissue using that needle with the verapamil and the saline and like I would like to say they’re turning cheddar cheese into Swiss cheese and that’s the, so you don’t really you don’t get rid of the scar tissue what you’re doing is instead of it being a solid block, you’re trying to turn it into sort of a wide open net so that when you’re becoming wrapped, the scar tissue will move and open just like you know just like it should in that area. Now that was, it was a few years ago that I was treated the protocol has changed. Well not across the board but the verapamil when I went through is these treatments were good in the early stage but now there’s a drug called, and I don’t know if it’s XIAFLEX® or XIAFLEX® but it’s XIAFLEX® and that is more what doctors are using now. However it seems that you have to wait later to get treated with that drug because it works more on softening the scar tissue when the scar tissue has already become calcified. So it seems to me right now if you go in early, the best thing to do is to get verapamil treatments and if you wait too long, then you neither get the XIAFLEX® or XIAFLEX® treatments for later on. I know people who have done both, I know men, you know I talked a lot of men who have Peyronie’s Disease or have had Peyronie’s Disease or who are still dealing you know, or starting to deal with it right now and you know it depends on how long they wait you know. But I think doctors are waiting these days more to head toward the XIAFLEX®. It’s FDA approved and that seems to be the protocol these days. But most men do wait a long time, I went in early but a lot of men are kind of freaked out and they wait a long time and they wait too long anyway for a really early treatment so they end up getting this later treatment anyways, it’s how it goes. But that’s, now some doctors do nothing, some urologists if you present, this they will say “Just wait and see.” You know but the doctor I saw in New York was definitely in the camp of you know treat early and often and that really did help me.
Neal: You’ve written a book ‘Bent But Not Broken,’ The title obviously it’s an appropriate title. Talk briefly about how this book helps or helped you to deal with any psychological issues that you may have been having because of your condition and is that the goal in the book to help other people dealing in the same way that you did or to offer suggestions on how to find their own path?
Don: Sure. No, I wrote the book originally, I was originally not going to write a memoir or is it going to write about a 40 page monograph like for an Amazon single where you just described the symptoms or what you need to do to take care of yourself and what you can expect for an outcome. So my original intention was to help other people, almost like a public service announcement and I just want to put that digitally online and people would have just downloaded it and that was my original intention. But I am in a writing group as I mentioned of course earlier and a writer and in my writing group, what people found very compelling were these psychological issues that came up between me and my partner of many years, the psychological issues I had about just relating to my own sexual self so it really ended up being a double-edged thing. What happened was the relief of focusing on helping others in taking the attention off myself was very helpful so that I and it made me feel less alone ultimately but also whenever you help someone else, you just feel better and then of course I did have to work through some of my psychological issues around this problem and really what we’re headed toward was acceptance. In the end you know I had a very good outcome from my treatments, but in the end my penis is different than it was to begin with. There’s no question, it’s shaped slightly differently, it functions slightly differently, I now not always, sometimes I’ll take ten milligrams of Viagra during sex to make sure everything’s you know working fully. So yeah, so the book in the end hopefully it will help others. I mean I know others are reading it and they are getting a lot out of it and people seem to be very mentally very happy that I’ve written it and also women have partners who have this problem, they’re very happy I’ve written it. And so yeah, it seems to be helping others and it certainly helped me to write it.
Neal: Well in and wrapping up Don, where can our listeners get a copy of your book and learn more about you and Peyronie’s Disease?
Don: Sure. You can go to my website www.doncummings.net and right at the top of that website there are all the places you can purchase the book. I recommend people try to buy the book locally as close to possible at a bookstore, you can order from your local bookstore, on my site. There’s a link that shows you how to do it really quickly and of course it’s also on Amazon and it’s also on Barnes & Noble. So if you go to doncummings.net you can see the different links to buy the book and also there’s a big old bio there and there’s all the reviews and other interviews and it’s all there on a very simple single scroll website.
Neal: Don, it’s been a pleasure thank you for joining us on the program especially at this hour of the morning. Well I guess everybody’s up and about on a Monday so thanks for joining us on the program man and hopefully you’ll come back.
Don: I really appreciate it. I sure will. Thanks for having me, okay.
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