Finding Hope and Humor After a Peyronie’s Diagnosis: One Patient's Story

26:49I got this animal thing happening to me and I'm just going to say, oh, you know, I had some bad luck. And so I was fortunate that so many people were in my corner, but I will give myself a small pat in the back saying this was in many ways due to the fact that my personality is such that I'm a bit of a yakky open guy. And that was helpful. So my point being a lot of guys coming at me, most men who talk on the Facebook site or reach me privately, believe me, they're not doing what I did. Like most guys are not out there with a book or a billboard or a, you know, a t-shirt or making jokes about it.

27:35Cause it's, it's, or a podcast. They're rightfully upset, you know, as was I very much. Yeah. But I don't know, I'm not comfortable keeping things inside. I get, they get extra, I feel like I get extra upset more than others. Like I think these taciturn types, maybe they just, I don't know, they have those personalities and they can do that. I'm not built that way. So. I was going to ask about anger. You know, how does, How did anger fit into your stages of acceptance? I had no anger. No. Yeah, strangely, no. No, I had depression. That's for sure. I had at times, I had this thing that happened to me.

28:18So I'm 48, I'm 49. And I'm thinking, well, I'm getting into my Yoda years. I'm like, I'm becoming an old man before my time. And I'm going to be one of these guys who's sort of on the outside of things. being a sage. And I thought, well, I tried to sort of get into this weird, you know, I'm believe me, I'm not that spiritual. I try to get the spiritual idea of like, I'm going to be like post sex. I'm going to be like this guy who, who has this aura, you know, this beatific way about him who sits on a lawn chair and just dispenses wisdom. And you don't have to worry about him like being a horn dog.

28:58Cause that is over, you know? um meta yeah and I so I tried to I tried to see myself that way now the truth is then as soon as there was an inkling that I might get a little better you know the Yoda I kicked to the curb you know I definitely definitely didn't want to be Yoda but no I didn't I didn't have anger but there were there were days where I was I I will definitely say there was there was a joy of life that was sapped and something I probably shouldn't leave out too. I started drinking. Oh yeah. A lot. And I was never a big drinker. I actually don't drink at all now for other reasons, but I just started drinking a lot and drinking's depressing, right?

29:42I mean, it's a known depressant alcohol. So that wasn't good. And then I, and I, I stopped that too. I was like, uh, you know, um, now can my drinking's like, if I go to France or if it's a wedding, but I'm not, I, I was one of those college kids. I didn't drink. I just, I wasn't that interested in it. You know, I don't know why never agree with me. Actually, my, my mother and my sister don't drink. It really bothers her systems. I think it's like, I don't know. I think for me, it's a bit inflammatory. It doesn't work well in my system. Um, but anyway, I was drinking a lot and it was bad. And, uh, and that's, you know, I was trying to escape these feelings of, uh, loss really.

30:19I think, I think what I was feeling mostly was grief and loss is what I really was feeling at the ripe old age of 48. And, uh, so I'm half Irish. So I, I, I grabbed the bottle. You poured one out and poured one out for your penis. Yeah. Yeah. Yeah. I mean, I think that's what you brought up is interesting in that you're, yeah, you're kind of mourning what, you know, what your penis used to be. And, and, and also you sort of became very stoic very quickly and became, well, I had a good run. Now I'm just going to sit back and watch everybody else do this at 48. That's, that's not a good run. That's, you know, that's a career cut very short.

30:58So not to use that pun, I think we'll, but, but yeah, it's a career cut short, right? So, So then tell me about the redemption arc then. So you're on the sidelines. Your lightsaber is not what it used to be. And you are thinking, wait a minute, there might be somebody out there that can help. And so you found Dr. Mohal. So we started this with, you're probably going to be okay. So we're going to use you as you're probably going to be okay for this segment. And just say, yeah, now you said, oh, there is something maybe out there to help me. So walk us through your journey through everything you did to get to where you are today.

31:35Oh, sure. Okay. Well, first of all, you know, a shout out to the American government for making health care such a difficult process. But Adam was switching jobs and his insurance changed three times. Like it was like old job, then intermediate insurance, the new job. So the insurance kept changing. So I was actually held up a little bit. This, let's see, I discovered this around February, March, and I wasn't really at the doctor until July. And it all had to do with insurance scrambling, which was such a drag. But Dr. Mulhall, like when you did her search, he definitely was the guy to go see.

32:17and I imagine you've spoken about this and on on other you know episodes but you know you go in for a curvature assessment and how that works is you go in and they give you what's the drug you use a little something give you an erection you know the name yeah it's alprostadil trimix edex there's all kinds of ones out there but yeah well I put a needle in the penis and pop yeah and Yeah, it'd pop you up. So, and in my particular case, I had no idea when I was going in for the curvature assessment, I had no idea they were going to give me a needle to do that. I just didn't know. And I was already, so I was pretty wired up when I finally got there.

33:01Cause you see, you know, so I have this, I see this thing happen to me and, you know, February, March months are going by. I'm beating myself up because of the sex down the street. I'm heading into my maybe Yoda years and so all these stories are building up in me and I'm ready to explode so I get to the doctor's office and maybe this is where the anger comes in I get to the doctor's office and they're gonna give me a needle and I had to get an erection publicly and I'm thinking there is no way I'm gonna it doesn't matter what they do I'm not gonna be able to get an erection right so they hand you some porn you know you you get your choice of what kind they give you the needle and the truth is i i didn't get an erection i like barely got one and i would they just said well you're gonna need some more so they had to like double the dosage now when they doubled it when they doubled the dosage that worked because i didn't even need porn it was just like you know but and apparently like dr mohal told me that adrenaline maybe you know this i guess is that adrenaline is an antidote for getting a good erection that apparently apparently it messes up your ice.

34:08So I was adrenalized, you know, I was, I was, I was very upset. And I remember I was telling Dr. you know, I was telling Dr. Mulholl, I said, you didn't tell me, you didn't tell me that I was going to get a needle. Like someone should have told me I was, I was so upset that this thing happened that I was getting a needle on my penis. And I didn't know, like I, you'd think someone would tell you that, you know, so I was, I was quite upset, But anyway, they do the assessment. Sure enough, over 30 degrees. At that time, my penis was going to the side. It was going to the left. So then they set me up for, you know, verapamil treatments, which went on and on forever.

34:50So there were, I had a total of 16 verapamil saline treatments. So they're separated by, you know, a few weeks, whatever it was, three, four. not not as far separated as zyaflex is it was a little closer but maybe just every few weeks and um you know i went in now now once i knew i was going in and getting in injections uh i was more ready plus they they use lidocaine when then they do the treatments with the verapamil so they the lidocaine you know numbs your penis so they give you some a lidocaine shot at the base your penis your penis is numb and they go in there with the needle and they're kind of talking to you and needles going in like so they put the needle they put the needle in when they're doing these rapamil saline treatments they would put the needle in and then they would move it around so they go yeah they move it all over the place so you're going all over the place under the skin and then they take the needle out and maybe do that in a couple other places and luckily you're numb the whole time and then of course when you get home a few hours later you're you know your penis is bright purple but what i liked about the the saline wrap meal treatment was all that saline like it just kind of filled up your penis like you just for the first time i was like you have this like elephant penis hanging there you're like oh well at least you're like like well at least it can still stretch to you know bigger you know so that was kind of good And then, and between that, so I had, I had eight treatments at first and I was using, uh, at the time it was called andro penis was the stretcher I was using.

36:30And I was doing that. I was stretching my penis. They said, you know, the longer, the more amount of time you could do it, the better in the beginning. And then the first months I would stretch my penis up to eight hours a day. Yeah. I was committed, you know, so I was, I was like, we're going to do this. Now, granted, you don't stretch it like a couple of days after the verapinal treatment because you're too raw. But then like a few days later, you're back at it and you're just stretching. And I would do it. I do it watching TV. I do it reading the newspaper. And I am someone who I wasn't someone who could put this stretcher on and walk around and have my life.

37:10And frankly, I didn't know anyone who could do that. Like I talked to some guys who also have Peyronie's disease. so the only way that would work is i would have to like kind of sit up in bed or sit up on a couch so there was a lot of like sitting going on you know like uh and i would just do other things while that was going on so that went on for you know so eight treatments that probably went on for about maybe that went on for about four or five months yep and then and i was doing pretty well and then dr moho said well i think you're done keep doing the stretching keep i was also using a vacuum device but i i never found that that helped much i didn't use it i did that for a while but i actually felt that it hurt and i i didn't like it so i didn't do that much but but within two months after my first round of treatments things got worse my penis shrunk more the upper half looked like a mouse head it got so tiny and then it started curving reverse candy cane toward my belly button and that was and that was that was like well now what and that was really really distressing yeah so i went back to the doctor and he and i said to him i said well did we did we start too soon was it you know because they they talk about the acute phase and then the you know the the what's the next phase after acute chronic chronic so active and active chronic yeah so i was you know so i did we did we just do it too soon and he's well maybe so i did a whole other round of eight treatments yeah and and that and that did that helped a lot um and you know i think it was a combination of getting out of the acute phase and and getting you know getting all these treatments but that all of that took 18 months yeah and then after that i continued with the penis stretcher one or two hours a day had to be for four or five years i just kept doing it and then of course i wrote that this book came out and a friend of mine right here and i moved back we had moved back to los angeles by then and and a friend of mine who uh you know we'll call him jack which is definitely not his name Jack tells me you uh you gotta you gotta go see Dr.

39:32Mills you know he you gotta get Zyoflex and I said really and because I thought I was done what I had left and when when I came to see you do was I had a constriction band still a little bit in the center of my penis and it was enough so that it felt like a you know it was the shape of a U and it was just like this tight band that made my penis look like it was in two sections. My erections were okay. You know, they weren't amazing, but they were okay. And then I came to see you and you, again, we did the assessment and, and, uh, you, you were faster and easier than the first time I went around.

40:12And I get that a lot. Fast and easy. That's what I'm known for. That's, that's, that's, that's, that, that should be, uh, yeah, that should be right on the four. but i we only we did four you know like the treatments are a and b whatever you do two treatments per tree so we did four with you and i think it was like over five months or something or six months maybe that's about right yeah and um and that constriction band completely was removed and it has never come back and i've never had another look at pronies again in the end i mean the beautiful thing about all this is my penis is perfectly straight.

40:50There is not a bend anywhere near it. There is no hourglassing is what they call it. Right. With that constriction. There's no hourglassing. There's no mouse head. There's no, sometimes with the hourglassing, you could get, you know, you'd be erect below the constriction and not erect above it. All that's, none of that trouble is going on. Now I am, I'm in my early 60s and my erections aren't as strong as they used to be. But talk to me and most guys I know at this age, you know, there's that's going on. So but the good news is, is that I definitely still do have erections. I still have sex and I'm very fortunate.

41:33I feel how it turned out. Now, you know, as Dr. Mulhall used to say, he used to always say, nobody ever died from Peyronie's disease. He said that all the time. And that was, you know, kept it somewhat in perspective because, you know, this was not a death sentence. It was just a, you know, exceptionally inconvenient thing to have to go through, you know? Yeah. Well, I'll push back on John a lot because we're very friendly and good professional colleagues. But I will say nobody's ever died from Peyronie's. But I've seen a lot of guys that would rather be dead than have peronies. And I think you talked about a little bit of the mental health component, which I never discounted.

42:13Some guys are so devastated. They become shut-ins. And thankfully, you had good support through it. And it sounds like you got good medical care. And not to be a bummer about it, like a couple of people in the Facebook group, there were two guys who suicides. There were. Yeah. Thank you for bringing that up. Which is just, you know, and now granted, you don't know what state they're in before they get Peronis disease, but still, whatever, you know, it's like I was in an okay state before I got Peronis disease, and I got really depressed and drank a lot. So, yeah, I didn't seem like the kind of guy who would do that.

42:47So, right. But no, Don, that's so important. I think I talked about this a lot. And I had a study with some colleagues of mine from Karolinska Institute in Sweden years ago that we published looking at the rate of suicidality and completion of suicide amid the peronies is something like three times greater than the general population. And men in general already, you know, we had other guests that talk about the mental health aspect of men's health. We're already really much better at killing ourselves than our female counterparts are. And so you put something like this is one step over the edge.

43:20Then, yeah, this is why it's so important to have these conversations and talk about it. I think just you and I having this conversation today, it's going to at least let guys know there's something out there that you have a support network, whether it's friends, family or health care providers. And that's, you know, that is our PSA for today is just that, you know, and a lot of it comes from the courage of you to be able to sit down and have the talk we're having. So thank you for that. Yeah, no, no, my pleasure. And, and also, you know, I think I wrote this in the book too. Like I, I wrote something like, and this is in my Yoda, you know, a bit of my Yoda stage, but it was like, at some, at some point I understood in life that I was, I am not my teeth and I am not my hair, you know?

44:02And then I realized I am not my teeth. I am not my hair and I'm not my penis. Like I had to do that, you know, and say like, I can't, you know, because you realize, you know, especially hey when we all get into our 80s and 90s you know there are going to be things that are going to disappear on you in your body you know they that are you know you could it could be something as simple as you know a gallbladder you know or or you could lose your sight you know I mean these things happen and um somehow I I'm not saying you know people talk about like you have to do this thing to accept this big thing.

44:42I'm not saying I'm good at it, you know, but I can say that I am aware that this is part of the, of dealing with living is, is these things that, that, you know, now granted, you know, these things that, that will go wrong eventually in life, obviously healthcare gets better and better every day as far as what, you know, we're able to do. But, you know, these things in life are little, I can't say tests, because I don't feel like I was being tested. But they are lessons in some way, you know, in some weird way, that this accepting the fact that you're you are a biological entity. And as disgusting as this sounds, like when you're driving on the street, and you see a dead possum on the side of the road and you know it's not much different from your future ultimately and it's a horrible thing and i can say this to people sometimes they oh don shut up you know i'm trying to enjoy book club or whatever and i'm like well but that is the deal you know that there's that old uh well whatever i don't want to get too morbid here but but but it wasn't but it wasn't it wasn't it wasn't like this is not out of the ordinary of what happens to people you know you know i think that especially in the united states where we're taught like you can have it all and nothing bad's ever going to happen if you have the right attitude and you can you know you could dale carnegie your way to anything and all these you know all these things and it's like well actually the truth is you know look look okay yeah i i've been a creative person so i've been a mostly a writer but I but for many years I was an actor and a musician I've done all these things and it's like like like I can assure you from from where I'm sitting having lived right in Manhattan live right in the middle of Hollywood and having access to all these things you know I haven't gotten everything I wanted who who has really you know what I mean and and this kind of goes all you know and i am in awe of people really who get through life like totally healthy the whole way get everything they want uh their marriage is perfect their friends are brilliant i mean i i have you met many of these people let's let's find them you know that's right no yeah i've just been trying to win friends and influence penises my entire show that's there you go that's that's my That's the sequel.

47:12That's the sequel he never quite put out there, but it's there.

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50:42I don't think I've ever heard a more existential approach to Peyronie's disease than what you've done here today. This is exactly why I wanted you on to have this conversation. Jordan, talk to us. You've been quiet. You've been still trying to figure out how a possum has anything to do with Peyronie's disease. I'm recovering from all the needle talk. I have a needle phobia. Oh, you did get a little bit pale there when you talked about needles in the penis. Oh, yeah, yeah, yeah. I mean, it's beautiful that you have this support system online and in your own home. You talked about Adam, your husband.

51:17I'm so supportive. of, but you've also mentioned that partners can still feel helpless. What do you think that partners of men with Peyronie's need to understand? Is there any advice that you'd have for them? Oh, wow. Yeah, I honestly, the big word is patience, because if you can be patient, if your partner with Peyronie's disease is being proactive and taking care of it, and it will, it will get better probably. It will, it will most likely improve. And so if you, so you have to be, so as a partner, you got to be really generous and patient. Um, and, and understand like, I look, I mean, we all know this as adults here, like there's lots of ways to have sex and there's other parts of your body you can use for different things.

52:11So, you know, I'm not going to be graphic here, but, but we, we've all, you know, we, we've all have discovered different ways to, to enjoy each other's bodies. So do that until the penis is back online, you know, like find other things to do. And certainly your, your partner, if they are in the mood, you can't, you don't want to force anyone, but if they still are feeling a little bit sexy at times, you know, the, the, some, that person with prone disease might be more than happy to oblige and do other things for you with you so patience and generosity and and then on the other side and to understand on the other side like yeah things might be a little different but more patience and more generosity I guess you know yeah and flexibility yeah yeah both physical as well as emotional flexibility yeah yeah yeah yeah so that's um and I was fortunate that you know Adam was great i mean i i have that's funny you know like like my my my joke about adam is he's not good at closing cabinets you know but and my joke has always been you know uh he forgets to close the cabinets but he doesn't forget to go to work you know so that's very important and that's right if you had to choose if you had to do that and and he was you know he was fantastic during all this.

53:30So I was, I was very lucky in that way. So yeah. I love this. Yeah. Yeah. I love this. Okay. So tell me this, we, we always talk about on the show, we, you're probably going to be okay. And you've done an entire episode of how this is not a life sentence by any means. And certainly if you're feeling like this is something that is overwhelming and devastating and is questioning your existence, then, you know, we have ways to help, but tell me what makes you, you on a daily basis. So this is the other question I always like to ask all my guests, just, you know, you're a fire survivor. Now you made it through the Altadena fires.

54:04So you've had a lot of perspective in your life, suffering from Peronis disease, suffering from this devastation of the Altadena fire. What did you do during that recovery? What do you do every day to make you you so that you can get on with your day and be the best person you can? What is your non-negotiable? What is the Don Cummings approach to getting up out of bed in the morning? Yeah, yeah. Well, I'm very project oriented. So usually what happens is, is I'm disciplined, I guess. And so I do my morning routine like anyone does, you know, eat breakfast, read the paper, whatever. But I'm more of an afternoon worker than I am a morning person.

54:45So I either have something to write or practice or mostly write. But I also, you know, you'll see the piano behind me I do some music work too um I I have things I like to do so where I'm very fortunate um is that I am drawn I am very strongly drawn to writing and doing music and being with writer folk theater folk whatever so I don't have to I don't have to try too hard to come up with a plan like the plan is kind of internal you know so that's the good news so i that's what i do so i work on my projects in the afternoons usually and then frankly my evenings are um mostly uh hey you know i actually i exercise i do exercise and it's very good for mental health i do do some form of exercise five days a week and my favorite thing is to do with the i these four this four mile very strenuous walk up here in altadena because lots of hills up here so So, and I do that twice a week.

55:51And that's my favorite thing is I would like to be outside, but I do, you know, I do core work and glute work and yoga. And I just, I do think being in your body physically and using your body every day, uh, is absolutely essential for mental health, you know? Um, so yeah, so I, I, I have projects to do. I take care of my body as best I can. Um, like I said, I don't drink, I'm not opposed to drinking, but, um, it doesn't quite agree with me. and I definitely again very fortunate I have a husband who not only goes to work but he's a good cook and we eat really healthy food so these kinds of things and keeping I meet these people who get to a certain age who are going to retire and move to some cheap town in the middle of nowhere I would never leave LA I've been here for decades, this incredible support group of friends I don't I would be devastated if I lost my friend group.

56:51I would. It would be terrible. Yeah. I'm not leaving. I love it. I love the plug for LA is a place where real people can live and be real. Yeah. I love LA. People who have never lived here, they don't really understand what it is, but I think LA is amazing. I think it's an amazing city. It's one of the world's most amazing and addictive drugs. Yeah. It makes us do irrational things like pay mortgages and taxes that are out of control. We have to live through traffic, fires and floods and earthquakes. And yet I just keep needing more and more of it. Yeah, I know. I know. It is so good for me. I hear you.

57:28I hear you. I'm right there with you. Well, Don, you delivered on the mailroom. I'm so grateful for your candor and your humor and your ability to just share your story in such a great and entertaining way. Bent but not broken is the book. And please, guys, it's really just truly a terrific read. It's hilarious. It's also very heartfelt. And now you get to know the author personally. So thank you. Oh, and it's all I'm looking at right now, and it's only 212 pages. There you go. It's short. Yes, that's right. I don't say it's an easy read, but it's a good read. And I'm grateful you're in my life, Don.

58:07Thanks so much for coming on the program. Jordan, thank you so much for putting this together. And then, yeah, let's take it out with some little blues music with Long Transit. Thanks so much to iHeart and everybody. My pleasure.

58:42of the mailroom Let's talk about it Let's talk about it in the mailroom The Mailroom with Dr. Jesse Mills was a production of iHeartRadio. It was executive produced by Jordan Runtog. It was edited, mixed, and mastered by Bahid Frazier, and the theme was provided by Long Transit. If you liked what you heard, please subscribe and leave a review. For more podcasts from iHeartRadio, check out the iHeartRadio app, Apple Podcasts, or wherever you listen to your favorite shows. This program is intended for educational and informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment.

59:28Consult your healthcare provider for any medical or other related questions or concerns. The views and discussions aired on this podcast are those of Dr. Mills and do not represent the official positions of UCLA or UCLA Health.

1:00:11We'll see you next time. 7.5, 10, 12.5, or 15 milligram injection. ZepBound contains terzepatide and should not be used with other terzepatide-containing products or any GLP-1 receptor agonist medicines. It is not known if ZepBound is safe and effective for use in children. Don't share needles or pens or reuse needles. Don't take if allergic to it, or if you or someone in your family had medullary thyroid cancer, or if you've had multiple endocrine neoplasia syndrome type 2. Tell your doctor if you get a lump or swelling in your neck. Stop ZepBound and call your doctor if you have severe stomach pain or a serious allergic reaction.

1:00:47Severe side effects may include inflamed pancreas or gallbladder problems. Tell your doctor if you experience vision changes before scheduled procedures with anesthesia, if you're nursing, pregnant, plan to be, or taking birth control pills. Taking ZepBound with a sulfonylurea or insulin may cause low blood sugar. Side effects include nausea, diarrhea, and vomiting, which can cause dehydration and worsen kidney problems. Talk to your doctor. Call 1-800-545-5979 or visit zepbounce.lily.com. The official language of football is trash talk. Late night group chats, memes, and unbelievable highlight clips.

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