Diane Newman: Welcome to UroToday's Bladder Health Center of Excellence. I'm Diane Newman, the Center's Editor. And here with me today, is Dr. Jeanette Potts, co-founder of Vista Urology in San Jose, California. Dr. Potts specializes in pelvic floor disorders, including pelvic pain. I invited her to discuss a recent letter that she wrote. It was a letter of the editor in the Urology Journal on, We Must Stop Misusing the Term Prostatitis. It was published in December, and I found that this was a very timely topic for our UroToday audience. Because as a provider in urology, I see many men referred who were given the diagnosis of prostatitis, but have varying symptoms. And it just seems to be like, it's a catch-all term.

So I thought, Dr. Potts, your editorial was really, very insightful. Can you summarize the concerns you have over the use of this diagnosis?

Jeannette Potts: Thank you again, Diane, for having the interview with me. But also, because of your ongoing, and just consistent interest in all urologic topics, but especially, this one that's near and dear to my heart.

After so many years of doing this, being involved in the prostatitis collaborative network since the mid 1990s, I just never imagined that we would get to this time, so many years later, and still have to point this out.

First of all, prostatitis is a misdiagnosis. Genuine prostatitis, proven with a localization culture, it probably occurs less than 5% of the time. And I know for a fact that, localization cultures are not performed, because when I moved from Cleveland to the bay area, I had to teach three different labs, including the lab where this was created, localization cultures, because the lab tech said, "Oh, we'd never do this. We don't have experience doing this." And so, I just had to do little refreshers for this.

So again, the yield is very low. It's understandable why people wouldn't do a localization culture. It is a fact, the yield is low. But by the same token, if the yield is low, then ethically, we need to look at other diagnoses, and we shouldn't treat empirically for prostatitis if there's a normal urine, which is very easy to obtain.

And then, that brings me to the next point about the diagnosis of chronic pelvic pain. That's not a diagnosis at all. That's a description. Chronic pelvic pain syndrome, bladder pain syndrome, that's just a description of a constellation of symptoms that vary between patients. So it's not a diagnosis, at all. So my point is that, once we rule out prostatitis, we're left with the dilemma of chronic pelvic pain. And then, it's up to us, as the provider, to decide and to formulate well, what is actually contributing to this person's chronic pelvic pain?

In my practice, there are usually more than one contributor. And that could be anything from a myofascial trigger point, it could include neuropathies, peripheral neuropathies, discogenic neuropathy. And sometimes, there could be an overlap with a colorectal condition, and a urological condition as well, like a bladder neck hyperplasia, bladder neck dyssynergia. And certainly, one of the most common things that we see in our practice, because of the amount of time that people usually suffer with these conditions, is a centralized, or a central sensitization phenomenon. Where now, we need to be looking at more global pain management strategies, that would include meditation, and neuromodulating, medications and lifestyle changes.

Diane Newman:  You bring up a really good point, because prostatitis is embedded in urology. Right? And like you said, it tends to be the catch-all term, when men have maybe, pain in that area, they're always looking for the prostate, and it could be one of many, many causes. Now the NIH has a collaborative network, and they have definitions, and they haven't really updated those. Right? As far as chronic prostatitis and that, there's been really no change. And really, what they have recommended, as far as assessment, and really, diagnosis, which I think is some of the problem.

Jeannette Potts:  It definitely is. To this day, when I'm looking at a new article, it just seems that people are compelled to cite the NIH classification system, as if to add gravitas to their publication. And to me, it just screams that, you don't know what you're talking about, or, you really don't take care of these patients. It almost seems like a resident's paper. And I see this also in the primary care literature. It's like, someone wants to do a review article about this condition, and again, they are forced to include this classification system, which it serves no purpose whatsoever. It's absolutely ridiculous. It's like what I say in the letter, you don't have somebody coming in with a chest pain, and the differential. You don't even start with a differential diagnosis. It's like, it's myocarditis, or, it's encephalitis, because you have a headache. Rather than, it's a headache, let's break it down to see what is in there. And among all the differentials, there is an infection or inflammatory process, but there are many more things to consider.

Jeannette Potts:  So I just think it's, in medicine, like in many areas of our culture, I think there is a tendency to just slow the way the boat changes direction. It's just slow to happen, because of our stubbornness, because of our habits. One thing that comes to mind is the history of the Swan-Ganz catheter, that took 27 years to convince people that it was actually killing patients. But for 27 years-

Diane Newman:  It was used.

Jeannette Potts: ... it was fine. Well, no, how could it be bad, that we put this instrument into the chest cavity and we get more data? That's got to be a good thing. And it's bias, and whatever. But it took 27 years to change our thinking about it. So I feel like, well, if that was happening in intensive care, there's probably little hope in urology, that this is going to change more quickly.

Diane Newman:  Well, NIDDK NIH has moved now to, they have a network, right, that's looking at the whole area of pelvic pain. So not necessarily, prostatitis. So I think we've shifted now, right, into the concept of, okay, we're looking at pain in this area, it's pelvic pain. But like you say, we still haven't seen that change in practice, as far as looking more globally, as to what's going on with this individual who was complaining of pain, or some urinary symptoms. And the thing is, you still see, I mean, I still see, men coming to me after being treated with antibiotics by maybe, sometimes four to five providers. And initially, they'll say to me, "Well, hey, the antibiotics help, but then, they don't help anymore." That practice, even with the fact of our concern about antibiotic resistance rate, is growing around the world. We don't still see that, I don't see that practice changing, where I am, here on the East coast. What do you think about that?

Jeannette Potts:  Yeah, it is frightening. I think that, this thought that we have to empirically treat an infection, it helps expedite the patient, and it helps us feel like we did something. But I would like to remind all of us, all of our colleagues, that, when you're not working in an acute setting, or with an acute diagnosis, the mantra has to be reversed. Don't just stand there, do something, is not what we're supposed to do. When there is chronic pain, any chronic condition for that matter, the mantra should be, don't do anything, just stand there. And we're just so pressured with time, that if we are just listening, and thinking, and analyzing, we are trained to believe we're not being productive, and we're not doing right by our patients. It's going to be a very big challenge today, and even in the future. Because I see medicine, the business of medicine, becoming so much more constrictive, and so much less collaborative. And I mean, with the patient physician partnership.

Diane Newman: Yeah. And the thing is, I wonder often, whether this population should actually be treated in urology. You know?

Jeannette Potts: Oh, yeah.

Diane Newman: I don't know where they should. A lot of people say, "Well, then just send them to physical therapy because they have palliative pain." And that's not the solution for every person who comes in. And you're right, because it's back to, they're not getting a really good diagnosis.

Jeannette Potts: No.

Diane Newman:  And they're directed appropriately.

Jeannette Potts: And I'm glad you brought that up, because I almost feel like it's politically incorrect to say this, but it's a fact. Physical therapists are not licensed to make diagnoses. And I am appalled, I'm beyond, I'm enraged, to think that a professional physician, a professional care provider, isn't doing the exam, isn't making the diagnosis, and then, dispatching the patient to a physical therapist to do the exam. So many men have said to me, that their first exam is the physical therapist.

Diane Newman:  Right.

Jeannette Potts: That is neither fair to the patient, nor to the physical therapist. That a very, very intimate, and very invasive, physical exam. And the patient needs to know exactly why they're being sent to physical therapy. It shouldn't be like this flippant thing. Because then, I see patients afterwards in two different ways. People who actually could benefit from the physical therapist, but because they never got a genuine diagnosis, and couldn't understand the rationale, they couldn't go forward with their physical therapy.

Jeannette Potts:  Just as often, but more dangerously, I've seen patients who have spent a lot of money, and worse, spent a lot of time, in physical therapy, more than one physical therapist, only to find me separately, and find out that they have a surgical problem. They have a surgical issue, and sometimes a very serious life-threatening issue, but they were going to continue going through physical therapy. Again, that's the lack of diagnosis. And this whole feeling like... I mean, I get emails when people say, "Well, I went to such and such clinic, and I got diagnosed, finally, with chronic pelvic pain syndrome." Like I said earlier, you didn't receive a diagnosis at all. You just had somebody regurgitate back to you-

Diane Newman:  Right.

Jeannette Potts:  ... your symptoms. So my job is to say, okay, you have chronic pelvic pain. Why? Why?

Diane Newman:  Right.

Jeannette Potts: And then, individualize the care.

Diane Newman: Well, and the thing is that, you're right. They're not getting a good diagnoses. They're just saying, oh, they have pain in the pelvis, and they get thrown into, oh, they're pelvic pain, well then, let's just send them there, because it must be muscular. Right? It must be around the area. And I get many, many men, who come back and say, "It didn't do anything for me at all." But it's back to the fact that they weren't really identifying exactly what the underlying problem is.

I asked you like, but where does this problem sit? I don't really think we're doing well in urology, so where does it sit?

Jeannette Potts: Yeah.

Diane Newman:  I don't know. I mean, who should be handling these conditions? And by the way, I'm seeing an increase in them. I don't know why. But I don't know, because it's becoming, patients, men, are becoming more looking for solutions, or are we seeing more pelvic pain? I don't know. But is it occurring more often, for some reason? But I do think that, this population... And it's getting younger, younger men.

Jeannette Potts: I think there's a combination of reasons why you may be seeing it more, because we saw an uptick as well, with COVID. There's more sitting, people are working virtually. But then you add to that, the social isolation. Especially with all these young men. They're not going out with their mates. They're not having a beer when they go, they're not having that connection. And they're also not having a sex life too.

Diane Newman:  Right. Right.

Jeannette Potts: They're not able to date as easily. And there's also, the risk that there could be more opportunity for just watching porn all day, and compulsively masturbating, and that's also a contributing factor.

Diane Newman:  A real factor. Right.

Jeannette Potts:  So it's hard, because it takes the stress relief of having sex, and having an ejaculation, is a good thing, and it's natural. But sometimes, there's this, overdone in some people, in some situations, and that can bring them to this condition, as well. But yeah.

Jeannette Potts:  Thank you for asking the question about, where this does belong. You reminded me of the other part of your previous question. If it's not too personal, I'd have to say, this is one of the first major arguments that I had with my now husband, Dr. Payne. We were both in the NIH study group, and we began dating, and I said to him, at one of our dinners, that this condition just does not belong in urology. And he just like flipped out, well, what if they, they might need a cystoscopy.

Diane Newman:  Right, right, right. What if there was, they probably have cancer. Right? Oh, they, we got to check the prostate.

Jeannette Potts:  Yeah. And I mean, he was loyal. He was concerned about the genuine interstitial cystitis patients, and things like that. But, he let me clarify my point that, the vast majority of patients don't have a urological condition, and that there are many tools in the acumen of a primary care doctor, to rule out some of the scary things, at first. But the family practitioner, especially, is very well equipped to deal with stress, family dynamic, central sensitization, myofascial trigger points, musculoskeletal and orthopedic contributors. That's part of primary care training.

Diane Newman:  Right.

Jeannette Potts:  So if primary care physicians are just well educated about when to refer, like there's blood in the urine, when to refer. The flow rate is this, or there's urinary retention, different kinds of warning signs to allow primary care doctors to do what they do best. And then, to know when it is the right to time to refer to urology. I just think it would be so much better.

Jeannette Potts:  But as I say that, I'm also feeling like I'm being incredibly unfair to the primary care physician. The primary care physician is so well trained, and comes out of residency prepared to do all these things, but then the reality of medicine hits.

Diane Newman:  Right.

Jeannette Potts: And then oftentimes, they're relegated to triaging patients, rather than, managing their care. And not managing their care, like how concierge doctors do, like just plugging you in, because they can get you in an appointment right away with a specialist, but like truly being your primary care person, managing this all the way through, up until a point, if it's necessary, to refer you. And there's just that, there's that empowerment that happens during training, that I can say was part of my training, but it can be extinguished so quickly in this modern setting of medical business.

Diane Newman:  And I think too, because it goes back to, I'm not sure providers know exactly what to do with these patients, and that's what's sad about it. I think that they don't know really, what is those first steps that they should be doing. And like you say, as soon as they bring up, because a lot of these, they do have voiding symptoms, but they also have sexual symptoms. I have men who say, "I have pain with orgasm. I have a pain during sex." So, they just avoid it, and they don't know really, what to do about it. So the problem is, is then, the first step is, okay, I'll refer you to my urologist, and then we get in. Or else, you start the antibiotics, and then they seek out treatment. But it really is. It's very frustrating. And what ends up happening, when I do end up seeing them, I'm sure you find this even more, they're very frustrated. A lot of them are angry. And they're so defeated, because they really haven't found a solution.

Jeannette Potts: Right. Well, and then that just, it then sabotages when you do try. If you're a busy urologist, and you have this patient come in, and you have every good intention of taking care of them, but maybe you're the fifth urologist. Well now, all of a sudden, you're going to get dumped on.

Diane Newman:  Right.

Jeannette Potts:  And at least, in my private practice, I'm very well equipped, and very well practiced, at getting dumped on by everything that's happened. But once that happens, if you're in a busy academic center, and you're pulling your weight, being one of the members of the team that's going to take the pelvic pain patient, because in my opinion, everybody, you got to spread the love, everybody should do it. They should maybe have it like, the patient scheduled, the last patient of the day, and it should happen to everybody. Not like the junior, who's only going to do recurrent UTIs. I mean, come on, let's be fair.

But then, that person is the physician, the nurse practitioner, the PA, they, all of a sudden, that little bit of enthusiasm, or that good intention that they mustered up to do that, is just taken away too. So my suggestion for that, is that when you're dealing with patients, even if you could do it right at the beginning, when they're scheduling, I'm scheduling because I've seen many physicians, or I've seen care givers, and I still have chronic pelvic pain. Maybe those, the schedulers, could be trained to say, "Well, we're going to schedule two blocks of time. Because you're going to need one block of time to do your history, and a separate block for the physical exam."

Diane Newman:  Physical exam. Well, thank you so much. I just found your editorial very provocative. And really, it needs to be said. What are we doing about it? And this term is just a catch-all. And hopefully, we'll see some changes in the maybe distant future. I don't know. But thanks so much for sharing your thoughts with us.

Jeannette Potts: No, thank you. Thank you.