← The Dr. Gabrielle Lyon Show
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- [00:00]
Dr. Sue McDonald
Testicular pain and pelvic pain similarly is neuropathic pain. I do not think we should chop off testicles, but people are doing it. But people are doing it, and people are doing it at double the rate of a nerve lysing procedure that actually has phenomenal success rates.
- [00:17]
Gabrielle Lyon
If someone is sitting there at home thinking, gosh, you know, I think that I'm sitting a lot. Maybe it's prostatitis. Is it a small progression? Does it impact the way that they can train or work out? Or is it something that is irritating? All of a sudden they're like, oh, my God, I woke up one morning and my balls hurt.
- [00:38]
Dr. Sue McDonald
People who carry a lot of stress in their daily life, it manifests in some way. I'm a big believer in the mind body connection. I saw patients over and over who'd been invalidated and told it was all in their head and just routine things that happen to people in life. And then it's like a switch flipped and they became a chronic pain patient. When I was 15, I remember having a tachyarrhythmia. I remember playing tennis with my brother and my heart rate went double time and slightly irregular. I got the halter monitor, I got a cardiac workup. And they're like, yes, you have an arrhythmia. And I said, what should I do? And they said, it's stress and caffeine induced.
- [01:21]
Gabrielle Lyon
What are our solutions for pelvic floor dysfunction?
- [01:24]
Dr. Sue McDonald
One of most important things about having chronic pain, whether you have chronic pelvic pain syndrome, understand that if you.
- [01:42]
Gabrielle Lyon
Doctor Susan McDonald, welcome to the show.
- [01:45]
Dr. Sue McDonald
Thank you.
- [01:46]
Gabrielle Lyon
You had me at. I was watching one of your grand rounds and you had me at the comment. It was just cut it off, just chop off the balls. And I was like, wait a second, is that a thing? And are people really doing that?
- [02:01]
Dr. Sue McDonald
Yes, it's a thing. Yes, people are doing it. And no, please don't do that.
- [02:06]
Gabrielle Lyon
Friends don't try that at home.
- [02:07]
Dr. Sue McDonald
Yeah, well, yeah, please don't do it yourself. But also don't go to a doctor who offers you that option ideally. So the analogy I make all the time is diabetics get neuropathy in their fingers and toes. And in your geriatric practice, I feel like you have to obscene this, right? Do we chop off their fingers?
- [02:26]
Gabrielle Lyon
Not unless they're gangrenous.
- [02:28]
Dr. Sue McDonald
Well, right, right. Like if it lack and like little mummy fingers, that's a different story. But generally speaking, no, we know that that is neuropathic pain and testicular pain and pelvic pain, similarly, is neuropathic pain. So I do not think we should chop off testicles and.
- [02:46]
Gabrielle Lyon
But people are doing it.
- [02:47]
Dr. Sue McDonald
But people are doing it. And people are doing it at double the rate of a nerve lysing procedure that actually has phenomenal success rates. And the thing is, we just need to disseminate that information and boom. That is why I am here today.
- [03:02]
Gabrielle Lyon
We're talking about a lot of things and you are very rare in your training and very rare in what you're doing. First of all, I know that men have a pelvic floor, but I didn't really think about it. And when I finished my fellowship, I started a practice or I joined a practice in New York City. There was a patient, he was a very high powered lawyer, has access to everything. And he was having what he described as prostate pain. Again, prostatitis. He'd been seen by multiple urologists. They put him on rounds of antibiotics and he seemed to potentially get better in a short period of time, but it completely derailed his life. I was not able to. You know, we eventually put him on an ssri, but this is something that is not so uncommon.
- [03:53]
Dr. Sue McDonald
No, it's really common. So firstly, thank you. You were on the right path actually, with the ssri. It's true. People have this pain and it gets labeled as prostatitis. It's like the 60s thing, prostatism. And they have perineal pain and pelvic pain. People have chronic or calgary or ball pain, if you want to call it that. And they just have this pain and we don't know why, and nobody really knows what to do with it. It's kind of like, you know, in the 90s when Prozac came out and mental health just kind of like exploded. So that person who couldn't get help is the perfect reason why we created these guidelines for chronic pelvic pain and for chronic or calgary or chronic ball pain. There are so many people out there who have pain and it gets mislabeled as prostatitis or epididymo orchitis, which is. Oh, my God, I'd say that three times fast. It's a mouthful. Yeah, I have trouble spelling it, but it's. It's an infection. Those are both infections, theoretically. And so they get antibiotics. Antibiotics, antibiotics. And yeah, they do have some temporary relief, but that's not what's going on. It's not what's wrong. It's not the root of the problem. And they don't get better.
- [05:02]
Gabrielle Lyon
How many men. And in Terms of age group are we talking about? So our day is sitting here. One of the producers for the show probably has never had testicular pain. Maybe he has, maybe he hasn't. Is it something for someone in their 30s?
- [05:18]
Dr. Sue McDonald
So most men that I see, by and large, are people in their, like, 20s to 50s. These are. Yeah. So these are, like active, functional people in the prime of their lives who get pain. And we don't know why it starts, and we don't know the exact mechanisms, and nobody has a great treatment. But we do have some options. We have a lot of options, and we have a better understanding of why now. So testicle pain, we know, represents about 5% of all urology visits. So that's a lot. Right. Like, all of the reasons to come to a urologist. One in eight Americans is going to get a kidney stone. So kidney stones are a ton. Then you've got, like, you know, all the peeing problems that we deal with. We have got cancers, erectile dysfunction. There's a lot of reasons to see a urologist. So the fact that Testicle pain represents 5% of all urologist visits is huge.
- [06:15]
Gabrielle Lyon
How many urologists focus on testicular pain in general and have good treatment for it?
- [06:21]
Dr. Sue McDonald
I wanna say none. No, it's not true. None. It's like 30 of us in the country. It's very few. It's very few.
- [06:27]
Gabrielle Lyon
I mean, it's very rare that you have a patient sitting in front of you that has been to five other specialists within their field. And that's, again, you know, as I think about, we don't always think about the patients that we can help.
- [06:40]
Dr. Sue McDonald
Yeah.
- [06:41]
Gabrielle Lyon
But the ones that we can't, I think, really stick with us.
- [06:46]
Dr. Sue McDonald
They do. They do. And then I want to dovetail that with. That's just testicle pain. Right. So the person you described had pelvic pain like prostatitis. We don't know, because those patients are. They come in with a very nebulous symptom complex. They don't come in, like, labeled perineal pain on their forehead or prostatitis. They come in with, you know, pain here or pain over here, pain that radiates down their leg, or all kinds of different pain. Chronic pelvic pain syndrome. It presents so differently to CPS. Yeah, CPPs. It comes in with so many different presenting symptoms. So when it comes into my office, it might be labeled as low urinary flow, erectile dysfunction, suprapubic pain, perineal pain, so many different things. So they don't Come in with their diagnosis. So it's really hard to categorize. Like, how many patients do we have in this country who have chronic pelvic pain syndrome? The answer is a lot. I just don't know how much is a lot.
- [07:50]
Gabrielle Lyon
Also, the idea, pelvic floor, the male pelvic floor.
- [07:55]
Dr. Sue McDonald
Yes. Deeply important. So let's talk about that. So when I started my practice, I had done, you know, four years of medical school, six years of residency, and one year of fellowship. And in that year of fellowship doing male reconstruction, which is completely unrelated to this topic, I first learned a little bit about male pelvic floor, the pelvic floor dysfunction. And then I went out in practice and I saw pelvic floor dysfunction everywhere. I looked and started to think I was a crazy person. I went back and read the chapter about chronic pelvic pain syndrome and like, the pelvic floor in men and how pelvic floor dysfunction could play in which about half of those patients have pelvic floor dysfunction. One sentence. There was one sentence in the whole chapter. And so then I went on this, like, deep dive. I spent years just like, reading everything I could get my hands on on, like, what is going on with these patients who are getting antibiotics and not getting helped. I don't like when a patient leaves my office and I have no idea what's wrong and how to help them. Right. Like, I feel inadequate and I go the extra mile and we all need to learn and grow. Right. And if I did urology and medical school and had no idea about men's pelvic floor, and you did medical school and you did a residency and you had no idea about fellowship. Right. Let's agree that our medical training taught us nothing about this. Yeah. So then you get into practice, and when I started telling my patients as I was building my expertise in this matter, I think you have pelvic floor dysfunction, My male patients would go Google, do you know what they find? Vaginas.
- [09:45]
Gabrielle Lyon
Totally.
- [09:45]
Dr. Sue McDonald
Wall to wall vagina.
- [09:46]
Gabrielle Lyon
Listen, as a woman who has a vagina, I will tell you what is pelvic floor dysfunction. Well, here's how we know pain on intercourse.
- [09:57]
Dr. Sue McDonald
You sneeze and you tinkle.
- [09:58]
Gabrielle Lyon
Yeah. Doesn't happen.
- [09:59]
Dr. Sue McDonald
Like, you should cake, all of that.
- [10:02]
Gabrielle Lyon
It's not so uncommon for women to discuss it amongst themselves. There's even pelvic floor specialists.
- [10:09]
Dr. Sue McDonald
Right? Pelvic floor physical therapists. There's all of that. Women hear about their pelvic floor all the time because it relates to childbirth and sexual. And like sex after childbirth and life after childbirth. So you learn how to train your pelvic floor. You know, okay, so interestingly, the pelvic floor, men and women both, but men in particular, you have this muscle group, okay? You have a hammock of muscles called the pelvic floor, which is there essentially to allow you to walk on two feet. It keeps all your guts in, right? And so it's a muscle complex. We call it the levator ani muscle complex, the pubococcygeus puborectalis. So nobody learns about their pelvic floor. And these men, they have the same pelvic floor that we do, so they can walk upright, and those muscles hold their guts in, but also those muscles have things that run through them. So it's a muscle complex of 3. Pubococcygeus, puborectalis, and iliococcygeus. And so, like your iliac crosser out here, and your pubis is in the front, your coccyx is in the back, and it's like a sling, a hammock, if you will, of muscle so that, like, everything just doesn't fall down when you stand up.
- [11:23]
Gabrielle Lyon
Do men have the same symptoms, for example, urinary incontinence?
- [11:27]
Dr. Sue McDonald
No. So men have very different symptom complexes that go with pelvic floor dysfunction than women, but they're equally pathognomonic. So, meaning, like in people words, when you come to my office, it takes me now, after 10 years of practice and reading and deep diving, it takes me like two minutes. You talk to me for two minutes, and I know, how does a man
- [11:49]
Gabrielle Lyon
know that he has pelvic floor dysfunction?
- [11:51]
Dr. Sue McDonald
So he won't know, but the pelvic floor therapist will.
- [11:55]
Gabrielle Lyon
And let me just tell you the entry of that.
- [11:56]
Dr. Sue McDonald
But there's two particular flavors of this that come into me quite commonly. So someone will come in and they'll say, so as a reconstructionist, how this happened is men have strictures. They have a blockage in their penile urethra. So the urethra in men is, like, roughly 6 inches. Their pee tube is longer than our pee tube. And so you can get scar tissue. And then their stream is weak because they're basically peeing through a coffee stirrer. So it's like, drip, drip, drip, drip, drip. And they know they're not 60, they're 30, right? So it's not their prostate. They're not an old guy. They're like, well, why don't I pee well? And so a lot of them will come see Me saying, I think, you know, I have a blockage in my urethra. And so that's how that got to me, and that's how I got the expertise. So then I looked and we would do cystoscopy, we'd put a camera in, clean, perfectly normal track.
- [12:47]
Gabrielle Lyon
Do you see the stricture?
- [12:48]
Dr. Sue McDonald
So, no, no, no. That's what I'm saying. They don't have a stricture. So there are stricture patients. And I treat those patients when we do surgery and we reconstruct their urethra. But so many patients had symptoms that mimicked a stricture, and they come finding
- [13:05]
Gabrielle Lyon
it's a 30 year old.
- [13:06]
Dr. Sue McDonald
It's a 30 year old normal guy who is active, has a job, all those things. Maybe doesn't even have pain or maybe has a little bit of pain, but he has weak urinary stream. When he ejaculates, he'll have pain for two to three days.
- [13:21]
Gabrielle Lyon
Pain on ejaculation.
- [13:22]
Dr. Sue McDonald
And sometimes he has pain in his testicles and he doesn't know why. And so what it is, is a stricture is a blockage. Think of it like a shower curtain of scar tissue in a tube. And so you can't get the pee through. However, pelvic floor dysfunction, it's like those muscles. Remember I said there's a hammock of muscles. There's things that go through those muscles, and all of those things create the symptoms that go with pelvic floor dysfunction. So there's a hole for your rectum. So these people are constipated, but you can't ask them if they have constipation. You know that you have to say, like, do you have a bowel movement every day? No. No one ever has constipation. But if you say, do you have a bowel movement every day without straining? They're like, no, I poop once a week. And I say, okay, we should talk about that. And then, you know, the urethra goes through, like the penis, and then the, the spermatic cords go through, and that's where the testicle pain from pelvic floor dysfunction comes in. So they can have any number of symptoms with all of those structures. That's why this is so confusing, because it presents with like 10 different symptoms. And it all goes back to the underlying, like, cause or etiology of the pelvic muscle dysfunction.
- [14:37]
Gabrielle Lyon
You know, I can't help but think about. Obviously, we focus a lot on muscle centric medicine.
- [14:42]
Dr. Sue McDonald
Yes.
- [14:43]
Gabrielle Lyon
I can't help but think, body composition, does that play a Role in pelvic floor dysfunction for men.
- [14:50]
Dr. Sue McDonald
You know what, I'm not so sure if body composition, like the fat muscle component does, but what I do think plays a component is high muscle tone. People carry stress in different ways. We all know people who, like for instance, people get tension headaches when they're stressed and that's because their trapezius muscles tighten and they don't even know they're carrying that tension there. And then it gets referred. Right? So there's people out there getting Botox to their neck muscles and it cures their headache. Similarly, I think as high functioning people, you and I, there's lots of people. You described a lawyer, right? Lawyers, high stress, high function, people who carry a lot of stress in their daily life. It manifests in some way. I'm a big believer in the mind body connection. So I'm going to tell you a story. Before I was a doctor, when I was 15, I remember having a tachyarrhythmia. I remember playing tennis with my brother and my heart rate went double time and slightly irregular before I knew anything about medicine. And it would happen sporadically, like once in a blue moon, like once every six months or something. As I went through residency, it became more and more frequent. And by the time I was a chief resident, it was happening every day. And I could put the pulse ox on my finger in clinic and my heart rate was 160. So like normal heart rate for the viewers, 60 to 90. So my heart was doing double time and slightly irregular. At the point where I was like feeling a little woozy. I thought, oh, I should get a cardiac workup. I might stroke out and die. So I did the whole thing. I got the Holter monitor, I got a cardiac workup and they're like, yes, you have an arrhythmia. And I said, what should I do? And they said, it's stress and caffeine induced. Which of course I had both. Lots of coffee and lots of stress. And then I graduated, stopped, stopped. When I wasn't a surgical resident anymore, when I was working 9 to 5 and sleeping and spending time with my family, I didn't have an arrhythmia for like a year.
- [16:55]
Gabrielle Lyon
Wow.
- [16:55]
Dr. Sue McDonald
And then I had to take my oral board. So to be a board certified urologist, you have to go into a little room for two days and let them ask you anything you've learned in the last 10 years. It's all fair game. And if you don't pass, you basically can't keep your academic job. Like you, you kind of have to be board certified to be an academic urologist. So stressful, needless to say. And the people I work with used to say, you're so cool. You're cool as a cucumber. You look so ready. And I'd say, oh, my body knows differently because. And I was pregnant at the time. I started having my tachyarrhythmia again, like clockwork, every single day for the month leading up to that exam. So for me, that is my manifestation of stress. My heart will tell me when I am more stressed than I should be for other people. They have their pelvic floor. And even when they come to me and we get things under wraps, I had a patient who came to me with a note like this. Like if a surgeon who usually writes a three line note writes a dissertation in the chart, there is a problem. And we got his symptoms under control. And then he said, I'm going back to school. And he was excited. He was like, yes. And I said, oh, no. And why? Because he was a single parent going back to school, and I knew how much stress that would put on him. And I thought, oh, your symptoms are going to come back and we're going to need. It's a waxing and waning course. And when you're under stress, your muscles tighten. You're not doing it consciously, they just tighten.
- [18:29]
Gabrielle Lyon
And so the levator ani, these are, these are not smooth. Are these smooth muscles?
- [18:34]
Dr. Sue McDonald
No, these are skeletal muscles. But the difference is where everyone can say, this is my bicep, flex my bicep, relax my bicep. None of us are taught, contract my pelvic floor. And I literally just did relax my pelvic floor.
- [18:48]
Gabrielle Lyon
For men, are they. For women? They talk about Kegeling, right?
- [18:54]
Dr. Sue McDonald
Kegels.
- [18:54]
Gabrielle Lyon
Kegels.
- [18:55]
Dr. Sue McDonald
Potato.
- [18:56]
Gabrielle Lyon
Yeah. What about for men? If. Because what I'm hearing you say is that it's not a low tone, it's high tone.
- [19:02]
Dr. Sue McDonald
They have high resting tone. Their muscles are clenching all the time. It's squeezing their urethra shut. That's where the pain from ejaculation comes. So their urethral sphincter is squeezed shut. And when the ejaculate, which is high velocity propelled, it hits a wall. Of course that hurts, right? And then the testicles. Many patients tell me they feel like their testicles are getting pulled up into their body. It's like their cremasteric muscles around their spermatic cord are being squeezed or activated. They have trouble relaxing. They'll have anal fissures or hemorrhoids because they have trouble relaxing their sphincter muscle as part of their pelvic floor.
- [19:42]
Gabrielle Lyon
Clearing up when to use. Is it Kegels or Kegels? Do we know?
- [19:50]
Dr. Sue McDonald
I say Kegel. Kegel, yes. I don't know. I think I say both. Tomato.
- [19:54]
Gabrielle Lyon
Tomato, yes. Some people say so, for example, with urinary incontinence, you have to learn how to contract those muscles.
- [20:05]
Dr. Sue McDonald
Yes. For ladies, Kegels is your best friend. You have a child and then you, like, sneeze, laugh, and you tinkle a little. You want to Kegel. You do want to tighten those muscles so that you can strengthen your sphincter muscle and not have incontinence.
- [20:19]
Gabrielle Lyon
But the chronic pain, the chronic pelvic pain is the opposite. You want to those. That's a high tone. So you want to reduce the tone.
- [20:28]
Dr. Sue McDonald
Correct. Exactly. So one of the things I ask people, and we know from data, that it's better if you go to a pelvic floor physical therapist, like a specialist. You can't just call up a physical therapist and say, like, hey, I have perineal pain. You have to ask them if they have specialized training in pelvic floor. So sometimes, you know, my patients come from two hours around, and if they're far away, I say, what did you do in your visit when they went to someone close to them? And if they tell me, Kegeling, and that's all they did, that is wrong. They're tightening those muscles. I think, Kegeling, to learn how your muscles feel and then learn to relax them is okay, but it shouldn't be the only thing you do.
- [21:07]
Gabrielle Lyon
It makes sense. And it's an important point to clarify because again, one is potentially that the muscles aren't strong enough post pregnancy. But you don't see that in the male population.
- [21:18]
Dr. Sue McDonald
No, Right. No, it's too tight. Too tight all the time. And they have high resting tone. And we need them to get that to relax, to chill.
- [21:24]
Gabrielle Lyon
The statement someone is anal retentive. I mean, that's kind of what we're. We're talking about. Yeah.
- [21:32]
Dr. Sue McDonald
Like that's on point. Because they're. They have high tone and they're not relaxing and pooping.
- [21:39]
Gabrielle Lyon
Well, now when I think about, say, shoulder dysfunction or neck tension, you can do yoga, you can stretch. What are our solutions for chronic pelvic pain syndrome? Or do we say, what are the solutions for pelvic floor dysfunction? Is there a way to have unified.
- [21:59]
Dr. Sue McDonald
Those are like a Venn diagram in my mind. Now. This hasn't been proven or disproven. Daniel Shoskies at the Cleveland Clinic wrote a really nice paper where chronic pelvic pain syndrome patients, about half of them on exam, will have pelvic floor dysfunction. And so we all, as urologists, do a bunch of rectal exams. It is perhaps my least favorite thing that I signed up for as part of this field. But when you're doing that rectal exam in our new guidelines, it explains what's called a360DRE. If you swing your finger laterally, you'll feel the pelvic muscle struts. And I always tell people when we describe prostate exams to medical students, we say, okay, touch walnut right here, the hypothenar eminence. You touch this piece of your hand and it's simulates what a normal prostate should feel like. So if you reach in and you swing side and you press, firstly the patient will say ow. But secondly, it feels like your bicep tendon. It's tight. It's tight and hard and it shouldn't be. And so then that elicits the pain for the patient. And then you have a diagnostic hint that like that patient has pelvic floor dysfunction.
- [23:07]
Gabrielle Lyon
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- [24:50]
Dr. Sue McDonald
Yeah.
- [24:51]
Gabrielle Lyon
You are feeling for the size, the. Yeah, pretty much the smoothness. We were not taught anything about testing the muscle.
- [25:02]
Dr. Sue McDonald
Me neither.
- [25:03]
Gabrielle Lyon
But is that now happening in training?
- [25:06]
Dr. Sue McDonald
No. So me neither. So I. Gosh. I learned that 360dre about six or seven years in as an attending. I was starting to do it without knowing it had a name and had been published in year three. I was starting to touch people's levator muscles and elicit this tenderness and write about it and talk about it. And once I started talking about it, that got me plugged into the other people on the guidelines panel. So Mike Ponteri at Temple became my mentor and told me about the other facets of neuropathic chronic pelvic pain and some of the other modalities to help. But, no, it is not taught, it's not talked about. I would venture to say most of our urology residents are not learning it.
- [25:53]
Gabrielle Lyon
Chronic pelvic pain syndrome. We're going to look at when it was given, if it was given an ICD10 code. The reason I bring this up because through my framework of muscle centric medicine on the opposite end of sarcopenia, I didn't get an ICD10 code until 2016. Sarcopenia?
- [26:11]
Dr. Sue McDonald
Yeah. If you can't name it, you can't treat it. It's tough. And in the American healthcare system, having the money behind it, like it's a code, an rvu, blah, blah, blah. It's a treatment, it's FDA approved, all of that. Like, we are a nascent field. We're just beginning to understand chronic pain and have treatments.
- [26:33]
Gabrielle Lyon
Can we talk about chronic pain in the brain?
- [26:36]
Dr. Sue McDonald
Yes.
- [26:37]
Gabrielle Lyon
And what you're looking at and how that ends up affecting the physiology.
- [26:43]
Dr. Sue McDonald
Yeah. So one of the most important things about having chronic pain, whether you have chronic pelvic pain syndrome or you have fibromyalgia, or you have some kind of irritable bowel disease, et cetera, understand that if you consistently have pain in your life, you fear that next episode of pain. They have done functional MRI studies that show that your gray matter actually changes, your control of the pelvic floor changes, and your register for pain changes. So what would register to a non chronic pain patient as, say, a 2 or a 3? Registers to them as a 7. The way I'll put that into, like, a real world example for you is I love this episode of Family Guy where Stewie's like, mama, mami, ma, ma, ma, ma, ma, ma, ma.
- [27:40]
Gabrielle Lyon
Sounds like my morning.
- [27:42]
Dr. Sue McDonald
Right. It's every overstimulated mother. So the thing is, you're primed, so even one mama. One mama is okay, but, like, when you get two, you're already creeping towards the top of your. You know, it's triggering, as people say. And so the thing is, these people live in chronic pain. And so when they start to get a little bit of pain, the fear and the anxiety play into that and it revs higher. It literally feels more painful to them. And so I think part of what's problematic is as providers, you see someone in your office and you lightly graze their testicle, and they go, ah, right. And so, like, it seems melodramatic. It seems like overacting. It seems psychological, to be frank.
- [28:33]
Gabrielle Lyon
And.
- [28:34]
Dr. Sue McDonald
But it's real. It's real, and they feel it that way. And. And so many providers brush them off because of a perceived disconnect.
- [28:43]
Gabrielle Lyon
Providers and residents, you and I both
- [28:46]
Dr. Sue McDonald
know all of them. Yeah.
- [28:47]
Gabrielle Lyon
When we're doing intakes in the ER in training. Oh. Oh, it's a pain seeker.
- [28:52]
Dr. Sue McDonald
Yes. Medication seeking people are invalidated constantly. People with chronic pain, because the degree of pain that they feel in response, and that's what they're feeling. And we have no measure for it. We can't prove it. But in their body, they're feeling 8 and 9 out of 10 pain. They're in pain. And it was just light touch for
- [29:14]
Gabrielle Lyon
the younger guy or younger guy, whatever. When we say younger.
- [29:19]
Dr. Sue McDonald
Yeah.
- [29:20]
Gabrielle Lyon
Less than 65.
- [29:21]
Dr. Sue McDonald
Yeah.
- [29:21]
Gabrielle Lyon
Under 65. Is it.
- [29:23]
Dr. Sue McDonald
That's younger. My. My clinic spring chicken.
- [29:26]
Gabrielle Lyon
Younger you. And geriatrics 65 and up is considered geriatrics. Is there a slow progression? Is this. If someone is sitting there at home thinking, gosh, you know, I think that. I don't know, my testicle is irritated or I'm sitting a lot. Maybe it's prostatitis. Is it a small progression? Does it impact the way that they can train or work out? Or is it something that is irritating? All of a sudden they're like, oh, my God, I woke up one morning and my balls hurt.
- [29:57]
Dr. Sue McDonald
So I think that yes and yes. So. We're hinting at the rest of this podcast, but before I was a cancer patient, I had deep and unabiding sympathy for chronic pain patients. That is what drove me to the deep dive. To quote The Statue of Liberty. Give me your tired and huddled masses. I saw patients over and over who, who'd been given antibiotics, who'd been invalidated and told it was all in their head, who had the craziest stories of how it happened, whether it was like, I got whacked in the testicle one time by my grandchild and now I have chronic pain that won't go away. Or, you know, like I lifted something one day, like very just routine things that happen to people in life. And then it's like a switch flipped and they became a chronic pain patient. And now this young, let's say 30 year old, this young 30 year old who's a dad, can't get on the floor and play with his children. And do you know how devastating that is and how badly he wants to do that? And he tries to go to his job, he can't work, and his construction company doesn't understand why an able bodied man with no obvious pathology, no CAT scan that says you're dying can't work because we don't have a scan that proves pain. Everybody comes in and wants to know why they have pain. And I'm like, I'm gonna use another analogy. When you come in, you wanna know why you have pain. All we can do is pictures. If I pop your car and it's not starting and I like pop the hood and I'm looking for why it doesn't start. Can you tell me why it doesn't start? No, only if like the battery terminal's not hooked up right. If I just take a picture of the engine.
- [31:52]
Gabrielle Lyon
Well, I know nothing about cars, but I'm assuming.
- [31:54]
Dr. Sue McDonald
Me too, me too. But here's the thing, okay? So an ultrasound is a picture, CAT scan is a picture. MRI is a picture, neuropathic pain or eye. All it shows is your anatomical structures. There's no functional study for pain and registering patients pain. So it's almost, it's almost imaginary. It's not imaginary, it's very real.
- [32:14]
Gabrielle Lyon
Is this why it took so long for fibromyalgia to similarly become. So for those of you who are listening or watching, fibromyalgia has a diagnostic criteria. I think it's.
- [32:25]
Dr. Sue McDonald
Yeah, it's a pretty long list out of my wheelhouse. But similarly, if fibromyalgia is something you can't put your finger on, that is devastating. Yeah, it's like pain points.
- [32:36]
Gabrielle Lyon
There's.
- [32:37]
Dr. Sue McDonald
And there's a coincidence of chronic pain syndrome. So there's a higher incidence of people who have one pain syndrome. Having another pain syndrome than should be in the population.
- [32:48]
Gabrielle Lyon
And for the longest time, also complex regional pain syndrome. As a psychiatry resident, there was only, I mean, there was a handful of patients that maybe two patients that had come in and they were sent to psychiatric emergency, when in fact the pain is real. And so what you're saying, it's real. It makes a lot of sense because we don't have a way of classifying it or figuring it out in terms of imaging or diagnostic criteria. That's a real challenge. You said something earlier about how these muscles, you know, when you have a tight neck or tight shoulders, how do we begin to think about treatment going
- [33:29]
Dr. Sue McDonald
back to the patients and the mind body connection? There's a lot of things you can do for yourself. So I direct my patients towards YouTube and pelvic floor physical therapists who will explain how to lower your resting tone. Deep breathing, meditation, stretching, these things are actually really helpful. And then, I know it sounds just absolute quackery.
- [33:54]
Gabrielle Lyon
Stretch these pelvic floor muscles.
- [33:57]
Dr. Sue McDonald
Yeah, like stretching isn't, is gonna like, relax them out a little bit. You know, if you're, if you have a charley horse in your calf and you do stretching exercises, that's gonna help. Everybody knows that, right?
- [34:08]
Gabrielle Lyon
In my mind, I can, I can visualize that.
- [34:11]
Dr. Sue McDonald
Right? You can think, Everyone can think of the calf.
- [34:14]
Gabrielle Lyon
Yeah, but I just.
- [34:14]
Dr. Sue McDonald
Or your arms. But you just like, you can't visualize your pelvis and how you're going to relax. But, you know, people do. People come up with stretching exercises and it works really well. Deep breathing exercises, guided meditation. And then another key factor is, and I find this particularly difficult in the male population. I think women acknowledge this more so than men, Forgive the generalization. But we know that stress and unaddressed emotional turmoil affects our body. Right. And so I know when I need to have, you know, a girl's day, that's what we do. We do a girls day for stress relief. But men don't necessarily acknowledge they're conditioned by society to be stalwart, stoic, to hold and be strong. And so all that does is actually increase their resting tone and make their symptoms worse. So I try to get them to acknowledge the stress points in their life, whether that's, you know, grocery prices are going up and I'm having trouble paying for my mortgage, financial stress, or there's stress in my marriage, we're really not getting along, or, you know, my son has special needs. And that's tough. And that's something to, you know, like, it can create some Family dynamics that are unpleasant. Whatever is the pain point in your life that's causing stress. Two things. One, address the pain point, work towards making the pain point better, and two, come up with coping skills to deal with the pain point. Now, firstly, I'll be the first to acknowledge that I had bourbon to deal with some of my pain points. And that is not how it should be done. But, but like it's a gateway. And then you can get into the meditation and the yoga and the stretching and all of the healthy things you can do.
- [36:03]
Gabrielle Lyon
What about heating pads? Yes, I do want to cover medication because we have a lot of physicians that listen. And I was. Again, I will link the. There's a grand rounds. The one that you did at Baylor. Actually, I think it's Baylor. You put a slide up there. There was gabapentin, there was, I believe it was also amitriptyline.
- [36:21]
Dr. Sue McDonald
Yeah. So those are the. So, so first, let's start with like the easy stuff. In my first visit, a lot of these patients have seen about six providers who've told them it's an infection. And so I have to roll that back with them. And I have to say like, no, it's pelvic floor dysfunction. Right. And the look I get when I tell someone with scrotal pain that some Miralax is going to call, like, fix their scrotal pain. I mean, I get a lot of looks like you are an absolute quack. So my first visit with people is trust building. And I say, what have you got to lose? It's a nine dollar bottle of Miralax. Like just go try it if you
- [36:58]
Gabrielle Lyon
guys don't know what that is. It's for conservation.
- [37:00]
Dr. Sue McDonald
Yeah, it's for constipation. I give it to my kids. You literally put some powder and some water and it helps you poop better. But the thing is, I heard this great lecture in medical school. Three people on a train in a pelvis, the old school bus seat. And so it's like a prostate, a rectum and a bladder. And if your prostate's too big, or let's say your rectum's big, you're not pooping. Well, if your rectum is a 500 pound man, then your bladder is like this and your prostate like this and they're both uncomfortable. So like if you get people to poop, then all the space in their pelvis opens up. Their muscle tone, relaxes, etc. So in my first visit, I, I catalog their symptoms. I asked them what bothers them the most. I validate that it's real and not in their head, and that I you're in the right place and I will help you. And then I also go through my thinking on a whiteboard. I like, literally rip off House all the time. I love Hugh Laurian House and the whole cast. That is a differential diagnosis on a whiteboard. I write down here are the things that I'm thinking. This test will rule this out. This test will work for this. And then I tell them my thinking transparently. And then I usually try to counter to what we're taught in medical school, Shotgun the visit and get as much done. Because the problem is these patients have been through the ringer already. They're distrustful of what I'm saying, and I need to make an impact to get them to come back. So I give them Flomax for their urinary symptoms.
- [38:32]
Gabrielle Lyon
And how does that work? Flomax would treat pelvic floor. It's not treating the pelvic floor. Right.
- [38:40]
Dr. Sue McDonald
I love visuals.
- [38:41]
Gabrielle Lyon
You're letting them get a little bit better. Symptomatic improvement.
- [38:46]
Dr. Sue McDonald
So here's the bladder. My wrists are the prostate, and this is the urethra. So it works on the prostate, but it also relaxes open the bladder neck, right? And so that allows them to pee easier and then they have less hesitancy. I tell them to take a hot bath for 20 minutes if they're not trying to have children, because it lowers your sperm fertility, as we talk about. So if you take a really hot bath, I say do it before bed because then they'll get good sleep for the first time in a while. And we know how important sleep is. I tell them two weeks of an nsaid, because an NSAID is an anti inflammatory. So I'm not just aiming at their PA pain. I'm trying to decrease the inflammation. Like if you have a muscle pull that is continuing to get those nociceptive, like, pain chemicals in your body that are flaring and causing the pain to get suppressed so that we break the pain cycle. So I do all those things in the first visit, and then I recommend some home stuff, like check out, you know, Stephanie Pendergast and pelvic health rehabilitation YouTube. She gives a longer form than I can do in the office. I say, check out these stretching exercises and just see if these help you. So I give them like five things, throw pasta at the wall, see what sticks. And if I can get that patient even 25% better, if I can make a dent, they will come back to my office because I am the first person who made them feel a little better. Then I can get into the really left field stuff, the stuff that I know that works, that they've never heard of and they'll think I'm absolutely crazy for mentioning when I say, hey, we're going to give you, you know, Cymbalta, we're going to give you an SNRI for your neuropathic pain.
- [40:24]
Gabrielle Lyon
The physician who's listening to this. And again, I, you know, I feel, I mean, I feel badly. I'm just thinking about this other young patient that I had. I've only had two patients that have come with these symptoms over the years, but one was a really young guy and we ended up sending him to urology. And I don't know what the outcome was because it was definitely outside of my wheelhouse. But listening to you, I mean, that's what he definitely had. The medication part. If we're giving them Cymbalta, this is
- [40:59]
Dr. Sue McDonald
again, so Cymbalta is completely off label and a trick I picked up from my anesthesia colleagues. It's not even written about yet. It's actually my, my project for this year's national conference. Just, it's been very effective in my practice for chronic scrotal pain and pelvic pain. Both Cymbalta, gabapentin, gabapentin Lyrica or pregabalin amitriptyline, the medications you think of for neuropathic pain. We're using those same medications for chronic pelvic pain and chronic orcalgia or chronic bulk pain pain.
- [41:35]
Gabrielle Lyon
I had. So this lawyer would go on rounds of antibiotics and the odd part is when he was on the antibiotics, it seemed to make the pain better. Is that some kind of anti inflammatory effect?
- [41:49]
Dr. Sue McDonald
I can't explain that. But so, so firstly the placebo effect is about 30%. So to some degree I think the placebo effect explains some of it. However, I've heard that story so, so many times credibly by people. I genuinely believe something is happening, that the antibiotics are helping temporarily. I just don't think that they're addressing the underlying issue. So I don't dismiss patients when they tell me they feel better for like a few days after the antibiotics. But I just say, you know, they, they've seen urgent care, they've seen er, they've seen primary care, they've seen people like maybe an app in urology before getting to me. So five or six people and they've had multiple rounds of antibiotics and they'll tell me they're better for a couple Days, and then it comes right back. And I'll say, well, it comes right back, and everyone's tried that, so let's try something different. Do you know what the definition of madness is? Let's go down a different road.
- [42:43]
Gabrielle Lyon
He ended up going to, I believe, Florida and was getting injections. They felt that it was related to the prostate. I don't know that there was a full resolution. Beyond medications to address the neuropathic pain, are there other things that individuals are utilizing, or is it, if I think about it through the female lens, you treat pelvic floor dysfunction and the pain gets better. They don't have pain on sex anymore. They don't. They do the pelvic floor exercises. They don't have urinary incontinence. However, for some women, they might need surgery. They might need a surgical repair. How do we think about crossover from the area that we know really well, women to what that looks like for men?
- [43:30]
Dr. Sue McDonald
So I think when you address the pelvic floor dysfunction, the symptomatology does improve remarkably. But I view it as a predisposition. You know how we talk in cancer about the 1, 2 hit? You know, you have a genetic predisposition, and then something changes in your cell line, and that's how you get cancer. So I think about it like, these are patients who are high stress patients with high resting tone. And when we teach them how to lower their tone, whether it's pharmacologically or stretching or whatever, yes, their symptoms get better. But life is life. Life happens to us all. So I never think that I have cured my patient. Even if we've worked for three years and they're feeling great and they don't need me anymore. I say, this is gonna happen again, right? Like, it's gonna come back, and here's what you do. And then, like, you re engage me and we work again. So I think it's a waxing and waning course over the course of a lifetime dependent on life events and stress that your body is put under. Pharmacology is one way you can do the stretching and everything. Also muscle relaxers. And muscle relaxers, yeah. So you can take systemic. I favor. You know, tizanidine is a really great drug. You can use rectal suppositories just to affect the pelvic floor. So I've used Valium or baclofen, which is a relaxer. I tend to use those later down the algorithm because of the addictive potential. And then, like I said, the neuropathic pain medications and then if you want to get really left field. So when I was on this guidelines panel.
- [45:07]
Gabrielle Lyon
Tell me about the guidelines. So you were part of the group that wrote the guidelines, the treatment guidelines for CPPs.
- [45:15]
Dr. Sue McDonald
Let's call it again.
- [45:16]
Gabrielle Lyon
This is.
- [45:17]
Dr. Sue McDonald
It's a chronic. Chronic pelvic pain syndrome. Say it three times fast. Yes. So chronic pelvic pain syndrome and chronic or calgia. Thankfully, we got a guidelines panel together to our national organization's credit because so many of these patients weren't getting the help that they needed. Beautifully we had so many different people from different facets of medicine come together and give their viewpoints because there are a lot of different ways to approach this. You would think a guidelines panel is somewhere where you go to give your expertise. But really what happened is they let the person who barely qualified. I was the junior most attending on this panel. Everyone else was much better published and smarter. I learned from them so incredibly. And then I learned things that I didn't even know existed. Larissa Bressler is really big into acupuncture and what acupuncture can do for chronic pain. The data is there, the evidence based medicine, the studies have been done. It's real.
- [46:24]
Gabrielle Lyon
It works similarly in the perineum. Talking about acupuncture.
- [46:29]
Dr. Sue McDonald
Well, I don't know where they put the needles. Off the top of my head.
- [46:33]
Gabrielle Lyon
I have seen it in the perineum. I believe it for this. And the perineum is the. The space between, would you say?
- [46:41]
Dr. Sue McDonald
Yeah, it's no man's land. The space between your scrotum and your anus. Like if I sit spread eagle, it's like right there.
- [46:49]
Gabrielle Lyon
If you are not watching this, you should be because she just demonstrated.
- [46:54]
Dr. Sue McDonald
That was so funny.
- [46:56]
Gabrielle Lyon
I have seen my best friend who's actually still my best friend. He's a pain specialist at Madigan in Madigan.
- [47:04]
Dr. Sue McDonald
Yeah, the RV base. Yeah.
- [47:05]
Gabrielle Lyon
He's an interventional pain specialist and he did sports medicine. He is Russian and he is very interested in some of the more alternative treatments.
- [47:17]
Dr. Sue McDonald
Yeah.
- [47:18]
Gabrielle Lyon
In residency, as he was going through his acupuncture training. He was doing acupuncture in the parent.
- [47:25]
Dr. Sue McDonald
Yeah, you don't even hear about it. The other thing is after doing that panel, I found out we had an acupuncturist at our institution and started referring the other thing that was really.
- [47:35]
Gabrielle Lyon
But do you think now just to pause here as I'm thinking people are taking action items. It's probably similar to pelvic floor physical therapy that you go to a specialists.
- [47:48]
Dr. Sue McDonald
Yes. You do. Right.
- [47:49]
Gabrielle Lyon
So it's not just I.
- [47:50]
Dr. Sue McDonald
Right. Absolutely. Thank you.
- [47:52]
Gabrielle Lyon
Can you imagine, I don't know, RJ
- [47:56]
Dr. Sue McDonald
going to, like, a generalist and being
- [47:57]
Gabrielle Lyon
like, hey, right here, I need acupuncture, because this groal pain, the acupuncturist, they might not know what to do. And they're probably acupuncturists that focus on chronic pelvic floor pain.
- [48:12]
Dr. Sue McDonald
Right. So similarly, there was a study done for pelvic floor physical therapy, which I would say is like, the main say of pelvic floor dysfunction. And we didn't really get into. But, like, going to a pelvic floor physical therapist is 1, 2, and 3 on my list. I don't.
- [48:26]
Gabrielle Lyon
That important.
- [48:27]
Dr. Sue McDonald
It's that important. I don't put it up front because there's a lot of rectal exams. And telling a man I'm going to sign him up for, like, regular rectal exams is not an appealing to the
- [48:36]
Gabrielle Lyon
person that has never heard about pelvic floor therapy.
- [48:38]
Dr. Sue McDonald
Yes. So you know how when you have touched and tear, people say, oh, you have a knot, and then they work? Yeah, I'm gesturing. I forgot it's a podcast. Okay.
- [48:50]
Gabrielle Lyon
So I'm just only listening to this.
- [48:53]
Dr. Sue McDonald
So I'm gesturing in my shoulders and in your trapezius muscle, like, right around your neck. Everyone will feel kind of like knots. They'll say, and they'll go get a massage, and people will say, you're tight, and they'll intentionally work on that knot. And what they're doing, as we know, is myofascial release. And so internally, pelvic floor physical therapists will insert a digit into the rectum. Now, ladies, we have another aspect. We have the vagina. And you can work on the vagina, but for men, I'm sorry, it has to be the rectum. So they have to get rectal exams, and then they use their digital manipulation to find their trigger points and, like, work on myofascial release. You can also inject anesthetics into the trigger point. That's another thing. Or Botox to, like, freeze those muscles and calm attention. All of that exists. I actually retrospectively reviewed my data one time, maybe five years in, and of the men I diagnosed with pelvic floor dysfunction, 44% went to pelvic floor physical therapy. And I think that's because 1. It is onerous to go to something week after week after week. It was a commitment.
- [50:00]
Gabrielle Lyon
Were you expecting it to be higher?
- [50:01]
Dr. Sue McDonald
Yes, I was hoping it would be higher, but I was not shocked. It was so low because I knew, you know, they weren't coming back to me. They didn't. It's multifactorial. So firstly, none of this data was out there. None of it was talked about. So when I said these left field things and they googled pelvic floor dysfunction and saw vaginas, they just thought I was a quack. They don't know that. It's more like I'm on the forefront and looking at what things are coming down the pike.
- [50:28]
Gabrielle Lyon
It's gotta be very humbling for, I mean, to have to. As a, I mean, as a woman. Cause I went to pelvic floor therapy when I was pregnant. Because I don't know. This is.
- [50:41]
Dr. Sue McDonald
As a physician, you know, it's good,
- [50:43]
Gabrielle Lyon
you should be doing it. And I don't even. I was like, I'm not going to be doing this. I don't care. And as physicians, we obviously don't always make the best patients, but we have knowledge and awareness of the things that we, quote, should be doing. Yeah, I think, you know, as I just even think about my husband or my dad, I.
- [51:04]
Dr. Sue McDonald
It would be very.
- [51:05]
Gabrielle Lyon
Yeah, they'd be like, no, I'm just. Not a chance I'm going to suffer.
- [51:09]
Dr. Sue McDonald
Yeah. So I think that that's why my first visit with them I consider a trust building visit. I give them easy, easy things to do like watching YouTube and stretching and a pill that they can take every day and hot bath.
- [51:23]
Gabrielle Lyon
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- [52:55]
Dr. Sue McDonald
It's not required. It is a small percentage. I make a small dent. I don't cure their pain, but I make a small dent in their pain and then they start to believe in the credence of what I'm saying.
- [53:05]
Gabrielle Lyon
Meaning if they don't go to pelvic floor therapy, where is there a potential for them to have resolution?
- [53:12]
Dr. Sue McDonald
Maybe so, maybe maybe. It depends if they're just chronic pelvic pain like neuropathic pain versus pelvic floor dysfunction. If you really have pelvic floor dysfunction and you don't go see a pelvic floor physical therapy, if you're moderate or severe, you need that pelvic floor physical therapist. That's the truth. And so my job is to explain it to you, to get you to trust me, to get you some buy in so that you'll go to that person. I'm not the person who fixes you, I'm just the person who gets you
- [53:42]
Gabrielle Lyon
to the person who fixes you neuropathic pain. We there are certain potentially comorbidities. Is that fair to say that it might be if someone is diabetic is that again as I think about this area.
- [53:58]
Dr. Sue McDonald
But honestly I would have to tell you these are 20 to 40 year old men, these are not diabetics.
- [54:03]
Gabrielle Lyon
Right. So are there comorbidities that.
- [54:07]
Dr. Sue McDonald
So it can be again we know that fibromyalgia has a higher coincidence in irritable bowel disease, depression, anxiety, irritable bowel disease.
- [54:16]
Gabrielle Lyon
That makes sense to me.
- [54:17]
Dr. Sue McDonald
Right.
- [54:18]
Gabrielle Lyon
Because it's like inflammatory bowel disease make that all makes sense to me as triggers. I guess what I'm trying to understand is from a patient perspective also as a provider perspective, if we know that for example Someone has type 2 diabetes and we know that they have had elevated blood sugar for again people will say the cutoff is above, you know, 126. I think that the glucose levels are affecting microvascular disease at much lower levels. But again we wouldn't tell it's quote, oh you have pre diabetes or diabetes, but the damage is already being done. As I think about these young, healthy, so called healthy individuals from a pathology perspective, is it maybe Lyme disease, is it comorbid condition? Are there anything any just we don't know.
- [55:10]
Dr. Sue McDonald
First place, no one's really like devoting the time and the study to this. But secondly, not from what I can
- [55:17]
Gabrielle Lyon
see sexual trauma, so.
- [55:18]
Dr. Sue McDonald
Oh, thank you for mentioning that. So sexual trauma There's a huge coincidence. It's very high. The. It's just batty to me. And how I learned that is the number one reason when someone seeks me out as a fear female urologist, of which there's only 11%. So it's 89% male urologist.
- [55:38]
Gabrielle Lyon
And I probably know half of you. No, I'm just kidding.
- [55:40]
Dr. Sue McDonald
You probably do. You probably know half of you.
- [55:42]
Gabrielle Lyon
Shout out to Reena Malik.
- [55:44]
Dr. Sue McDonald
To Reena Malik. And Danny Velez.
- [55:46]
Gabrielle Lyon
Danny Velez.
- [55:47]
Dr. Sue McDonald
There's very few women in urology, but when someone specifically requests a woman and then says, like, I will only see a woman in urology, commonly, exceedingly commonly, it's because they have a history of sexual abuse by a man and they don't want to have a male doctor. At least that's been my anecdotal experience. Because what happens is, and this is how I learned this, for better or worse, I am fair. I'm not always nice, but I'm definitely fair. So when I would go into the room of these patients, I didn't always get that disclaimer from the front desk. So I would go into the room, I'd send a male resident, because most of my residents are men, into the room, 90%, and they would kick the male resident out, and then they would demand to see me and me only. And at first, I would perceive that as them being a difficult patient. Like, they just don't want to talk to a resident. They only want to talk to the attending. And then when I would go in, they would explain that they didn't want to talk to a male doctor, and I would double down and I'd say, you know, I got thrown out of a lot of rooms and didn't get to do exams, and it was merely because I had a vagina. And that doesn't affect my ability to deliver good quality medical care. What's good for the goose is good for the gander. This young man, yes, he has a penis, but he's also an excellent physician. Our genitalia does not affect our cognitive abilities. So. But then they would eventually disclose. And now, as years have gone on, when someone requests me, I know, and I. I try to practice trauma informed care. And I say, you know, a lot of my patients, and you tell me if this resonates with you or not, but they have something in their past that was traumatic. It could have been, you know, it could be like a veteran with PTSD from the war, or it could have been, you know, they had an untoward experience with a Family member or it can even be something like, you know, sexual abuse or maybe just like childhood neglect, adverse childhood events. And then I just let, I open the door and it's up to the patient to step through it. I do not drag it out of them and make them relive their worst life experiences. But I remember vividly, just like one random day in clinic, a resident presented to me, I heard pelvic floor dysfunction all over the presentation. And I call it my spidey sense. I said, my spidey sense is tingling. I was like, I just think there's something more to this. So I said those words and the patient said back something like, you know, stuff happens with babysitters. And the resident looked me and like just like whipped his head around and looked at me like, how did you know? And I thought, you know, I don't know, like it's just very common. I think, you know, I hear on Instagram, I can't remember who said it, but your body keeps score. And I think that when you have physical abuse, sexual trauma, you do have tightened tone your muscles. Your body is in constant fight or flight trying to survive and guard itself. And I'm not an expertise in that. That's just my, it, it makes a lot of sense.
- [59:09]
Gabrielle Lyon
I've seen, I still see patients and oftentimes as you were mentioning this open ended questions when things can't get resolved doesn't you know, it's just for example, sleep that you have good sleep hygiene. Maybe they're taking melatonin and then maybe it's trazodone and there's something, they just
- [59:35]
Dr. Sue McDonald
can't sleep and it's because there's something unresolved.
- [59:37]
Gabrielle Lyon
Yeah, there's just this very high sympathetic drive and that makes sense. Progression. How does the clinical picture look in terms of progression? Neuropathic pain, dermatunal tracks. Is there a pattern that you expect to see? So for example fibromyalgia, it has an. I can look it up. It's there, I don't know, 13 points where it could be.
- [60:09]
Dr. Sue McDonald
So I diagnose, I make it really simple when I give my lectures and stuff. And for pelvic floor dysfunction, there are a couple of red flags that just tell me right off the bat that you have pelvic floor dysfunction. I call it testicle pain plus. So again, I thought it was being gaslit and a little crazy because it wasn't being talked about. I was reading, reading, reading, but I kept seeing it everywhere. So I did this project.
- [60:37]
Gabrielle Lyon
You kept seeing it?
- [60:37]
Dr. Sue McDonald
Clinically clinically. Every day in clinic I would see, if I saw 30 patients, I would see five to 10 pelvic floor patients who were coming to me as other things, who were coming to me as weak urinary stream, erectile dysfunction, other things that I do. But then when we got into the meat of the visit, it was pelvic floor dysfunction. So what happened is I took, I did a research study mostly just to try to understand, right? And I took every patient who had chronic or calgia, and I took everyone who had chronic orcalgia. But then I did the rectal exam and diagnosed their pelvic floor dysfunction. And keep in mind, it's an underrepresentation cause. Not every patient lets me do a rectal exam. I give them the right to refuse for obvious reasons. And a fair number of them refuse. Just the small number who have ball pain and tight muscles in their pelvis and looked at their symptom profiles. So much more likely to have constipation. So much more likely to have urinary symptoms. Like multiple factors more likely. And their urinary symptoms are different. Their urinary symptoms are weak stream and hesitancy because they're being blocked, because their ability to pee through that closed sphincter is weak.
- [61:52]
Gabrielle Lyon
So it's not always BPH.
- [61:54]
Dr. Sue McDonald
No, it's not. It's not BPH in a 30 year old guy. It's not. It's not period, end of story. It's not. And, but they manifest like that. And so for them, they think, like the average person thinks, okay, you have a stricture, you have a blockage. But when they investigate and there's no blockage, everyone's stumped, like, well, okay, it's in your head. Yeah, well, they just say you're fine. Anatomically, you're fine. Like every study we get says you're fine and you're fine, but then the patient goes home with pain and a bunch of symptoms and they can't explain it. And imagine if you're 30 and you're trying to have sex with your wife and then it's painful for like three days. You like literally have to lay on the couch and take Advil. It's deeply disturbing. So, so that's the thing. Those patients have pain after ejaculation. They have 14 times more likely to have constipation. They have urinary symptoms. Now I call pelvic floor dysfunction.
- [62:50]
Gabrielle Lyon
Pain plus pain plus. Does it affect fertility?
- [62:56]
Dr. Sue McDonald
Not as far as I know. I mean, in theory, yes. I think the pelvic Floor is squeezing the cords. But no, no one's done the study. I don't have any indication that it does.
- [63:09]
Gabrielle Lyon
What about hydrocele or some kind of surgical could a surgical correction. Penile implant. I know that you do those. Can that cause pelvic pain? Chronic pelvic pain.
- [63:24]
Dr. Sue McDonald
So the most common cause of pain in the groin area that I see, that's post op would be a hernia repair. About like 10% of people will get groin pain. But again, I send them back to their general surgeon or to the anesthesia pain clinic to deal with that on the hydrostele front. The funny thing about that is what happens is patients have testicle pain, they go to the doctor. It's a little bit like that game when you're a toddler and there's like a square peg and a round peg and a star. We don't know what to put you in, so we're just going to call you a square and hit you in there, right? So they're like, okay, you have testicle pain, we'll get a testicle ultrasound and then whatever comes back. And I kid you not, it's like varicocele, hydrocele, spermatocele, those are all benign findings. These are completely benign findings. But the patient understandably sees a long medical word on their ultrasound that was done for pain and comes to me and says, I have a hydrocele. And you know what I do? I say, I have a freckle. I have freckles. Oh my God, I have freckles. I have freckles. They're right there, look. Yeah, but the freckles not killing me. And it doesn't bother me. And yes, I see it. And so the same thing is true. Varicoceles can cause pain. It's true. But they have to be like grade three. And there's a classic teaching. Varicoceles cause pain at the end of the day. Like varicose veins. You stand on your legs all day and then you don't get as much venous return and then they really pop out. Similarly, varicose veins around the testicle cause pain when you're like really working hard. And it goes throughout the day. These patients have pain sporadically. They have pain multiple days, every day. And they come with like, there's a grading scale for varicoceles. And some of these varicoceles we can only see on ultrasound. Like, I don't feel them on exam, etc. So we call those clinically insignificant. So these clinically insignificant varicoceles come to my office and they're like, operate on my varicose. That is not the problem.
- [65:23]
Gabrielle Lyon
But you are one of a handful of urologists that are looking at chronic pelvic pain.
- [65:31]
Dr. Sue McDonald
Correct.
- [65:32]
Gabrielle Lyon
If someone is going to another urologist that maybe is out of training, has
- [65:38]
Dr. Sue McDonald
not been exposed, they could get a varicocele surgery.
- [65:41]
Gabrielle Lyon
They.
- [65:42]
Dr. Sue McDonald
They could, and then they won't be better, and that is problematic. And part and parcel of, like, why I'm here trying to disseminate this information, because the surgery you really could get and should get and would help you. Again, this is just if you have testicle pains. So if just testicle pain, but not chronic pelvic pain, what we can do is we can inject your spermatic cord with a local anesthetic, and that gives you temporary pain relief. And in my practice, you can do it a bunch of different ways. But I call that a dress rehearsal. I explain to the patient, this is not therapeutic. This is not designed to be your ultimate treatment. What we're doing is proof of principle. We're going to do this. You're going to take notes. Because the other thing is you, me, everyone, we don't really know when we feel bad or when we feel good. What we notice is the transition points. When you feel horrible and you start to feel better, you notice. When you feel great and you start to feel bad, you notice. But if you're feeling great, you don't pay attention. If you're feeling terrible, you just know you feel terrible. So we're kind of like just people. So I say, I want you to be mindful and present, as the kids say, three times a day. I want you to stop what you're doing and write down a pain score. Stop. What's my pain? One out of ten post injection. Yeah. And so I have them write it on a sheet and bring me homework so I can see the trajectory of how the block worked or didn't work. And then if the block worked, I say, okay, let's do a second block. And now do the thing that caused you pain. Put this block through its paces. For my military guys to say, run with your pack on. You know, for my young guys who are trying to make a baby, I'm like, go have sex. Go see if that hurt. Like, are we having pain? You know, do whatever and then come back and tell me. And again, bring me the sheet. And if they come back and it worked really well, if I strip the nerves in a surgical denervation called a microsurgical denervation of the spermatic cord, which is. Ooh, such a mouthful. It's a little bit of trickery math. But I say there's an 85%. You'll be half better. But in general, I'm so selective of my patients that anecdotally I can tell you these patients are pain free. Just about all of them are pain free. Not everyone. And even of the patients who get half better, I look them dead in the eye and I say, knowing what you know now, would you go through the surgery again? And in my head, I'm thinking they'll say no if it was a lot for not a lot. No. These patients are, like, over the moon. Thank you, doc. I feel so much better now. I can do this in my life now. I can play pickleball. Yeah, I have to take a little Advil first. But, like, I can do things. I and many other doctors, help make life livable. And what is life if you're constantly miserable?
- [68:37]
Gabrielle Lyon
A lot of erectile dysfunction in a lot of young guys.
- [68:40]
Dr. Sue McDonald
Yes. Yes. More and more, I am seeing 17 year olds in my clinic telling me that they have erectile dysfunction. And what makes the visit tricky is their mother comes with them. So it's a little bit.
- [68:56]
Gabrielle Lyon
I mean, I guess technically she has to because they're under.
- [68:59]
Dr. Sue McDonald
I don't think she has to, but. And then it's very understandable, but, like, talking about their masturbation habits gets a little tricky with their mother and their room.
- [69:08]
Gabrielle Lyon
I've never seen anyone talk about masturbation more comfortably than Reena Malik. Dr. Rena Malik.
- [69:15]
Dr. Sue McDonald
Well, let me try to live up to that bar. She sets a high bar.
- [69:18]
Gabrielle Lyon
Yes, she does. Why? Why is this happening?
- [69:23]
Dr. Sue McDonald
So, okay, I don't think we can prove causality, but what we know is that in the early 2000s, Wi Fi and social media became, you know, ubiquitous. And now we can all stream anything we want on our phones anytime. And so my sexual education when I was younger, When I was 17, my mother gave me the Our Bodies Ourselves book. I did not know my goods. I did not know anatomy. I knew nothing. In fact, my mother taught humanities. And on the COVID of the humanities book was Michelangelo's David. And I remember hearing all these jokes about size matters, and I was literally like, he has such a small penis. I thought they were supposed to be big. I didn't know what an erection was. I was 17. So all of that is a plug for better public health education on bodies. They really don't know. And now you take that same setup where we have young people with no education about their bodies and their parts and how they work except readily available pornography. And so they can access it. They access it all the time. The data shows that people are accessing pornography at quite high rates even in their youth. The genesis of this thought project was an endocrinologist told me the same thing. I'm having a lot of 17 year olds come in, they want testosterone testing because they're penis isn't working. And then they get sort of filtered to me that obviously pediatric urology was like, we deal with congenital deformities, we don't talk about sex. Could you do this? And I was like, well, talking about erectile dysfunction in a 17 year old is slightly different than a 65 year old, like long standing married man who's had sex for a long time. It's far more delicate of a conversation. The thing is, if we go back to operant conditioning, you remember Pavlov's dog? So, yeah, so Pavlov would ring the bell and feed his dog and eventually he would ring the bell and the dog would salivate because it triggers the response. So young people are operantly conditioning their body to like the most intimate touch that they know and visually stimulating themselves for what I would call like Las Vegas or Disneyland style sex. It's just so much stimulation, so much activity. It's a lot. It's like sex cubed and on steroids.
- [72:00]
Gabrielle Lyon
And that is the expectation.
- [72:02]
Dr. Sue McDonald
And so then I see then after masturbating constantly and using pornography, they have a real life girlfriend who you know, hasn't had intercourse and is new and they try to engage in what is real life intercourse. And they don't get the same level of stimulation obviously that pornography or their hand, which knows exactly where they like to be touched. We're all awkward in the beginning. We're all figuring it out. Of course they can't get an erection because it doesn't stimulate the same pleasure centers in their brain, et cetera. They're conditioned to need that. It's kind of like I say to patients, if you had a foot fetish, right, if shoes really did it for you and you secretly watched shoe related pornography every day of your life and you were married and then your wife came in in like bathroom slippers and a bathrobe and said, honey, you know, it's date night, that's not the same. That's not going to turn your crank because over and over you've conditioned yourself to want stilettos or whatever the case
- [73:13]
Gabrielle Lyon
may be for young 17 early 20s. Is this a. Again, erectile dysfunction? Are we looking at a diagnosis of exclusion? Or how as someone is listening to this, or if a mom is like, okay, I have to have this conversation. Is there any amount of porn that is acceptable? Matt, the other videographer you met was saying that 78% of men are watching porn. How do we begin to make sense of all of this when we think about just the landscape of healthy relationships?
- [73:51]
Dr. Sue McDonald
That is a big question. No pressure, far beyond my pay grade, but I do have two young sons and I do think about it. The only problem I have is with it being the first, you know, first entryway to people's sexual life. It's just not. It's not a gateway drug as the course would be. It'd be. It'd be like doing heroin off the bat. I feel like then, and I don't know how we recreate natural progression of sexual experiences when this visual intense modality is so readily available to young people.
- [74:33]
Gabrielle Lyon
We're entering a new landscape that is evolving medicine in a way. We're not, I think, again, just personally,
- [74:38]
Dr. Sue McDonald
we're not keeping up with it.
- [74:39]
Gabrielle Lyon
We're not able to keep up because instead of, you know, your kids going to some friend's house to, I don't know, play Mario Kart, they have access to YouTube, they're playing these games that are totally outside the scope of what should be available for young brains, and then subsequently are having erectile dysfunction. Who knows what the young girls are thinking is normal and it's just skewing. It's not enough to say that it is just dangerous because of the predatory nature. Yeah, but I think that again, I was recently in Germany and I was talking to this athlete and he was telling me about his story. And one of the things that he said is that he was exposed to, you know, he kind of had a come to Jesus moment per se. And he said one of the things that really struck him was that when he was 14, he was exposed to pornography. And this then had implications throughout his entire life. That then in his late 20s, early 30s, is going, you know, this. That changed everything.
- [75:56]
Dr. Sue McDonald
I don't know how much we can shield people. It's just out there. I think educating is important. I had the sneaking suspicion because in the beginning I would see one 17 year old a year, and now I see two or three a month. I ended up doing a database research project where you don't get a lot of detail in this. We can't talk about causality. Is it porn? What's driving this. But I can say from a national database that the incidence of ED in adolescence is doubling. It's rising now. It's very small. The number is less than 1%, but it is going higher. I think that's driven by pornography most certainly.
- [76:44]
Gabrielle Lyon
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- [78:28]
Dr. Sue McDonald
Yeah. Because you're in both brackets. Right. So how do you figure out which one?
- [78:32]
Gabrielle Lyon
Well, it, I mean, I just am thinking about this one patient that he smokes a lot of pot. I'm like, hey man, it's the cannabis. There's nothing wrong with you vascular wise.
- [78:41]
Dr. Sue McDonald
Yeah.
- [78:42]
Gabrielle Lyon
But now I'm thinking, did I miss some kind of excessive porn use?
- [78:48]
Dr. Sue McDonald
So, so that's, you know, I talk about their masturbation habits. Who's their partner? What are they doing with their partner? Do they have any paraphilias, kinks that they quietly engage in but don't engage in with their partner? What's different? The other thing I think we should address is sort of the elephant in the room, which is, there's a lot going on in the world today and mental health is not super great from a lot of people. And when I was getting together this article on all of the causes of erectile dysfunction and everything that could be done, I did this deep dive into MRIs and brain activation. And. Okay, firstly, Gabrielle, let me just tell you. Someone gets paid to watch people have sex in an MRI scanner and watch their brain light up. But what's interesting is there's a sequence of events that happen and I'm gonna, like, paraphrase loosely for you. Okay, so the first thing is, you know, your hippocampus remembers what is good and what is bad. It's like the memory zone. And, and so if you have a positive association with a prior person, a prior thing, a shoe, a person, whatever position, et cetera, like, your hippocampus is going to start being like, yeah, yeah, yeah, yeah, let's do that. And then you're going to do a thing. And let's say, and I like to use like the silly example of let's say that I really like my index finger stroked. It's just woo. That turns my crank. So, so, so when you're the first
- [80:19]
Gabrielle Lyon
person ever who I've ever heard that. Learn something new.
- [80:23]
Dr. Sue McDonald
Okay, no, but it's a joke, you know, so like, okay, so there's the part of your body that registers touch. So this is my right hand. And then, you know, in that portion of my brain that registers sense the, you know, the sensation of touch. Okay, so that goes up to your, your cortex and registers touch. And then you have to assign a value to that touch. So deeper in your brain, I think it's your amygdala, if I recall correctly. But it assigns a value and says, yes, I like that. Touch or no. In one of the episodes in Sex and the City, someone licks her teeth when they kiss. And that was a big no. So we all have these visceral reactions and sensations to that. So, okay, stroke my index finger. Touch. Yes, I do like that. My brain says to me, now a key portion of that is your parietal lobe and your temporal lobe. My parietal lobe and my temporal lobe. Like not right this second, but often, maybe 90% of the day is going, did you put in the field trip forms for your school? Did you get the extra juice boxes? Did you send in that review paper? You know what, we all as busy people have a to do list or things that we're worrying about. And that's carried in that portion of your brain. If you do not turn off that temporal lobe, you will not succeed in sexual intercourse. Like your. Your parts will not rev up. You have to. Those parts of the brain get deactivated in order to carry out this activation process in your brain. So, okay, touch it. I like it. Yes. Deactivate. And then we go down the spinal column, we get an erection or engorgement of our clitoris, as the case may be. And, you know, now it's party time.
- [82:14]
Gabrielle Lyon
It makes sense from, you know, there's a saying that women take a really long time to warm up. And I think that men are very good at compartmentalizing. And also from a physiological standpoint, it's. I don't know, the wind blows a certain way and he's ready. And women are again, their parietal lobe, their temporal lobe are thinking about all these other things. Not to say that men aren't, but.
- [82:43]
Dr. Sue McDonald
Well, we talk about the mental workload that women carry in the house. Right? So to our sex researchers out there, hey, somebody. Gender differences in the brain, because women do take longer.
- [82:56]
Gabrielle Lyon
You know, my husband gave me this. I don't know if you've seen this book. It's, like, what it's called, like, porn for, like, porn for women. And you open it and there's a guy who's vacuuming the.
- [83:10]
Dr. Sue McDonald
I said it.
- [83:12]
Gabrielle Lyon
Clothes.
- [83:12]
Dr. Sue McDonald
You know, chore play. Chore play is what it's called. I saw an amazing Instagram where he was like. He threw his laundry on the floor and then he moved it and put it in the basket. And the wife's like, totally.
- [83:25]
Gabrielle Lyon
The porn industry has it wrong. So there's the porn for men, and then the. What women really want. Yeah, yeah.
- [83:34]
Dr. Sue McDonald
Desperate.
- [83:35]
Gabrielle Lyon
Just want to throw that out there. Can we touch on penile implants?
- [83:39]
Dr. Sue McDonald
Let's.
- [83:40]
Gabrielle Lyon
Do you put in penile implants?
- [83:42]
Dr. Sue McDonald
I sure do.
- [83:44]
Gabrielle Lyon
Who qualifies for that? And I say this before you answer.
- [83:48]
Dr. Sue McDonald
Yeah.
- [83:49]
Gabrielle Lyon
A woman could go to a plastic surgeon and say, you can just get breast implants. Double D, please.
- [83:56]
Dr. Sue McDonald
Yeah, but those women are paying out of pocket.
- [83:59]
Gabrielle Lyon
Tell me about penile implants. Who qualifies?
- [84:02]
Dr. Sue McDonald
So firstly, penile implants are very expensive. More expensive than breast implants, I think, Although I don't know the exact numbers. And so the thing is, most people get it covered by insurance. So that's where the qualification thing comes in.
- [84:16]
Gabrielle Lyon
One is esthetic. Typically esthetic. So breast implants typically are aesthetic, not medical necessity. Is that why individuals who would have to pay out of pocket for Breast
- [84:28]
Dr. Sue McDonald
implants versus yeah, so I think, I think that like breast reconstruction after mastectomy would probably be covered. Breast implants in that scenario would be covered as medically necessary. Whereas if you're in a cup and you don't want to be, I don't think that insurance foots the bill for that. Similarly in men, patients who have lost their ability to have sex after prostate cancer, treatment, surgery, radiation, et cetera, patients who have had long standing diabetes and their nerves have been ruined and now it doesn't work. And interestingly, even patients who have volitionally smoked their whole lives can get their implant paint paid for, basically.
- [85:07]
Gabrielle Lyon
If the penis smoker can get a penile implant and they determine that it's medical necessity.
- [85:13]
Dr. Sue McDonald
Medical necessity is anyone who has erectile difficulty and typically, you know, has failed PDE5 inhibitors. So Viagra or Cialis, they want their testosterone checked to make sure it's not a low testosterone issue. And then plus or minus, if they've tried injections or a vacuum device for first and that'll usually get them approved and then they can have a penile implant.
- [85:39]
Gabrielle Lyon
And it's not cosmetic at all.
- [85:41]
Dr. Sue McDonald
Well, it's functional. Right. So the only way they can engage in penetrative intercourse at that point if their penis doesn't work is, you know, a penile implant. So for the listeners, it's a bit like if you imagine breast implants where I think it was with like Bruce Almighty, they have a remote control and you can make them increase and decrease. So you have a pump and it makes it go up and down. The other thing I tell my, I live in a conservative area and there's three pieces to the implant. There's two cylinders that go in the penis like a hot dog. And then there's a pump that shifts the fluid and then there's a fluid balloon. So if I act like the implant for you, okay, so here's my cylinders, here's the balloon, and it's like a seesaw and I'm the pump. Okay. It's Saturday night, it's go time. All the fluids in the cylinders ready. Okay. Sunday morning, it's brunch with the in laws. No, no, no. All the fluid goes in the reservoir. So then, you know, you either have an erection or not. And it's. That's why it's called inflatable, because it goes up and down.
- [86:40]
Gabrielle Lyon
How often are people getting implants? Is this a common surgery?
- [86:46]
Dr. Sue McDonald
It's a very common surgery. Common enough that there are people who, that like, that's what they do for their career.
- [86:51]
Gabrielle Lyon
It's not really discussed that much.
- [86:54]
Dr. Sue McDonald
I'm aware. No, it's not. Except at cocktail parties after people ask me what I do.
- [87:00]
Gabrielle Lyon
You know, I wish. You're very popular. People would really find that interesting.
- [87:05]
Dr. Sue McDonald
It's sort of. It's both lovable and annoying for my husband because he says he's a computer programmer and people glaze over and then they ask what his wife does. And I joke that I should put penis professional on my business card.
- [87:18]
Gabrielle Lyon
You know, it's difficult sometimes to have these conversations because there's a lot of jokes that I will be saying, and I recognize for the listener or the viewer that they might. Those that are not in the medical profession might find it really offensive, you know, talking about penis jokes. But I could do that all day long.
- [87:36]
Dr. Sue McDonald
Me too. That's why I signed up. The job I literally. Penis jokes was in the pro column of being a urologist.
- [87:42]
Gabrielle Lyon
I mean, it's unbelievable. There's lots of memes that I get because, you know, as my husband is in a urology program. Sperm, surgical, cats. It's a whole thing.
- [87:53]
Dr. Sue McDonald
All kinds of things.
- [87:54]
Gabrielle Lyon
It's a whole thing. Anyway, I want to talk about your red hair.
- [87:58]
Dr. Sue McDonald
Yeah. Thank you.
- [88:00]
Gabrielle Lyon
Before we started recording, you said, listen, Gabrielle, the idea of science communication is really important. And the idea of science communication is really important to you.
- [88:10]
Dr. Sue McDonald
Yeah.
- [88:10]
Gabrielle Lyon
And so part of my attention.
- [88:14]
Dr. Sue McDonald
Yeah, so part of why I'm here today. I admire deeply what you do, what Rena Malik does. Rachel Rubin, Ashley Winters. I've been really deeply inspired by some of the women in my field who have been brave enough to put themselves out there. Because I think as physicians, we want to help people, but we're not naturally people who seek out fame or really even want that. Like, I enjoy anonymity, but I realized that just doing the research or just seeing the patients wasn't enough. I asked Reena Malik one time, very early in our careers, why don't I do the YouTube thing? Like, what, what, what spawns you to that? And she said, in a busy clinic day, I can reach what, 40 people. I can help 40 people. She says if I post a video, it might get a million views. Like, think of your reach. And I wrestled with that for a long time as a private person. And then I got cancer. And so I went from being a busy, active mid career surgeon with a trajectory for sort of, you know, the top of my field. And then 2.5 weeks, I became a stage four breast cancer patient. And it was the shock of A lifetime. I had no family history. I felt a lump. I got a biopsy, and then it was just like, boom, boom, boom. One thing after another. Not only is it right, it's right, left, and lymph node. And I was like, ooh, stage three right off the bat. No family history. Cool. And then I was praying for nomads. Nomads, nomads. And I got my scans and I got the call, and that just rocked my world. And I went on medical leave and I took a lot of time to think about what my goals were with time in my life. And they had ballparked me at seven years at that point.
- [90:10]
Gabrielle Lyon
Okay, so it was 18 months ago.
- [90:12]
Dr. Sue McDonald
18 months ago. So what? But we're got like 5.5 left. By my math, I'm doing very well, so maybe more. But, you know, you have to plan for the worst. So I thought my goal was to have this storied career as an educator because I am the program director right now at Penn State, and I teach residents how to be surgeons. And sometimes that means do better. You are not good enough to operate on a human do better. Like, I consider it my job to make them the best that they're going to be before we unleash them. But I was going to train one person and then they were going to train the next, and it was going to be like this, like, dynasty of my surgical abilities. But that's not going to happen now. My time, my time course is considerably shorter. And also it's really tough with all of my treatments to churn and burn in the same way I used to. So I regrouped, I thought about, I took stock of my skill set and this very hard earned medical knowledge. A decade of practice, seven years of surgical training, four years of medical school. Like, I'm not just someone who should just poof and never do it again, Right? That would be a shame. I did consider it. I mean, people consider just, you know, hauling off to Bali and doing whatever
- [91:33]
Gabrielle Lyon
they want with the finite time that
- [91:35]
Dr. Sue McDonald
we all have, I definitely thought about that. But I think that fundamentally, helping others has always brought me joy. And when I thought about the people in chronic pain, which I had always had deep sympathy for, how they were normal, young, 20, 30, 40 year old guys, and then one day they woke up in chronic pain. And now every day, the first thing they feel in the morning is pain. And they can't live their life the way that they want to. It's not that dissimilar from what happened to me. One day I Woke up and my life just like it was. Like a bomb went off and I can't live like I used to. I have so many physical maladies. And I got catapulted into menopause at 42 and 43. It was just after my birthday. That's the cruelest thing. I got my path on my birthday weekend and it just, it just radically changed my life. And so when I thought about time and the meaning of time and what do you do with time? Don't get me wrong, I have doubled down on family. I have doubled down on love. I have doubled down on gratitude for the people who help me. Help patients, just are good, wonderful people. I firmly believe that in karma and what you put out in the universe. Right. So I'm going to put it as much good out as I can and help as many people as I can. So I got brave now. The red hair and the sparkle shoes, that's just me. I'm a punk rock girl and I love color and I love vibrance and I am just not going to be. I dressed the part for the medical regime for a long time. Like when we picture doctors, we don't picture you and me, we picture old 60 year old men in white coats. Right. But that's got to change because you're awesome and I'm awesome. And so people need to know that, you know, people with muscles and amazing long black hair, like they got this right. And like people with red hair and piercings, like we got this, like that does not change our cognitive function. That's just the window dressing.
- [93:48]
Gabrielle Lyon
You know, stoicism, typically right now in this space, just in general, it comes through from a very male lens.
- [93:59]
Dr. Sue McDonald
Yeah.
- [94:00]
Gabrielle Lyon
And that kind of strength that you put one foot in front of the other with a diagnosis, that's, I would say most people, you know, I did palliative care in my training. They don't do what you're doing.
- [94:17]
Dr. Sue McDonald
You know, I keep hearing that my palliative care doctors and everybody I know keeps telling me, like, most people don't do what you're doing. I don't know how to be anything else. Like an Olympic athlete. You know, we're seeing all these Olympians on tv. I spend my whole life in pursuit of medicine and being a surgeon and helping people through that. And I can't do it in the same way anymore. But there's so much I have to do to help and so much purpose I have left. And I have time. I have the gift of time. Some cancers will kill you quick. I Have time. So I'm gonna live big. I'm gonna love big. And damn it, I'm gonna go on any podcast, any grand rounds, anywhere, anywhere anyone is gonna let me talk. I wrote a book, or I'm writing a book. I started a YouTube channel to teach surgery. So I thought, okay, I can't be in the OR all the time. How do I disseminate what happens in the or outside the OR? So I started a YouTube channel called Surgical Basics, and that is knot tying and it's how to gown and glove. It's like the basics for medical students to accept, accelerate their learning curve. Because I firmly believe video podcast is the wave of the future. It's how we all learn now. Our brains are hardwired for it. So whatever way I can disseminate the chronic pain information, I've picked up the men's health information, and even cancer patient advocacy. So as a patient going through this journey, I've learned how much we leave to the patient. You go into an oncology visit for 40 minutes and it is so incredibly medically dense. They have to talk to you about the organ where you have cancer. They have to tell you about the type of cancer you have. Is it a good actor or a bad actor? They have to go through all the treatment options, make a decision. And then there's other things, like with me with metastasis, we have to talk about, like, should you get radiation or not? Or what are we doing about this? Or how much will this limit your functional ability? I think it's an insurmountable task. I think our oncology team has so much to do. And if we say, I mean, forget that we say the average patient has a seventh grade reading level. I'm talking about me, ostensibly a person with resources, time, money, and a medical education. An md. Challenging. So challenging. I pre game for my visits. I read stuff, I write lists of questions, I go to my visits, I take notes on my visits and I study. Still miss things, you know, I learned that my insomnia, which was probably like the thing that impacted my life the most after the cancer journey, was that
- [97:07]
Gabrielle Lyon
because of surgical menopause or it was the meds.
- [97:10]
Dr. Sue McDonald
It's the chemo meds I'm on, the chemo meds I'm on cause insomnia. And my doctor may have told me, probably did tell me, but there was so much else that we talked about. And so for six months, I would wake up like clockwork and I'd play a game with myself to figure out the time and I got down to 15 minutes. I could guess within 15 minutes, was it 2:01, was it 3:15, was it 4:01? And one of my colleagues in the cancer support group used to say, swimming in your mind is a dangerous place. You ought to have a lifeguard because the quiet hours for cancer patients are lonely and the intrusive thoughts come in. And then I watched who's Dying for Sex. And Michelle Williams told me that my insomnia was due to my drugs. And then I reached out to another cancer patient and she's five years in and I said, does it get any better? She said, I still wake up every night at 3:00am
- [98:10]
Gabrielle Lyon
you know, so you
- [98:12]
Dr. Sue McDonald
learn to manage is the answer.
- [98:14]
Gabrielle Lyon
I, you know, as you're sitting here and you're talking about chronic pelvic pain, penile implants, all of the things that people need or suffer from and what your role is right now, which is to educate, to give back, to be of service. I think there's one more thing and that's you're an example. What you are up against is, I mean there's no words for would be very easy to say, you know what, I'm out. I'm going to go hang with my kids, I'm going to go on my hobby farm. Peace out. But instead you're like, wait a second, I'm here to contribute. I'm going to do this, I'm going to do this. I'm going to get up and get after it. Have you always been like that?
- [99:08]
Dr. Sue McDonald
Yes, but to be fair, I do the hobby farm and the kids, I just flip a switch. So I thought about how to disseminate and then did the YouTube channel thing. And then I've paired with I want to talk to cancer patients about all the things that we don't get talked about because the visit is so dense, like exercise and nutrition, which vibes with your wellness brand. The things that we could be doing for ourselves that we don't. You don't always know how to access that information. And actually I had a hard time accessing it myself, even as a doc at a world class cancer center. And so I've started interviewing with Oncology Times and that is talking with oncologists and it's for doctors about the other things they could bring to patients. And then I've started with Cure Today doing short form videos directed at the cancer patients to give them the tools and the autonomy to find their best doctors, best treatments, et cetera, to understand the stuff that, like the insomnia that you know, you don't always get dealt with. And sometimes a lot of tips and tricks. Some of it has come from palliative care. I have a great palliative care doctor and some of it has come from just my support group. Somebody says, like, oh, this cream really worked for me or, you know, whatever. And so I guess I just, I want to do it all. I can't. I know I can't. I'm really limited in energy now, so I have to be very intentional about my time and my efforts. But let me just say, as I look you in the eye, there is nowhere else I would rather be in this moment. Been discussing this with you, Dr. Lyon, and helping chronic pain patients find the care that they need. And tomorrow, I will turn this off and I will be digging in the dirt with my sons.
- [101:05]
Gabrielle Lyon
Dr. Sue McDonald, you are extraordinary. Thank you.
- [101:10]
Dr. Sue McDonald
You're extraordinary. Thank you for having me.