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Diane Newman: Welcome. I'm Diane Newman, nurse practitioner and adjunct professor of urology and surgery at the University of Pennsylvania in Philadelphia. I'm also editor of the Pelvic Health Center of Excellence on UroToday. I'm here today with Dr. Jeannette Potts who is a physician who specializes in male pelvic pain and other urologic conditions. Welcome, Jeannette.

Dr. Jeannette Potts: Thank you. Thank you, Diane.

Diane Newman: Tell us a little bit about your background and what you're currently doing.

Dr. Jeannette Potts: Well, you know, I'm not a board-certified urologist. I need to make that clear. Ironically, if I were a board-certified urologist, I'd probably be operating all the time. It's actually worked out very well that in spite of leaving a surgical career for an office based career, that I could actually have the brain space and the inspiration to take care of men with this condition. I was very surprised early on to realize that there was a very negative approach or a very negative attitude towards the men, sort of an emasculation of men with the condition, and a one-size-fits-all type of therapy, i.e., just six weeks of any antibiotic. As we all know, today, fluoroquinolones have a black box warning, and yet those are still used as the one-size-fits-all. Pain below the belly button in a man under age 50, it's just prostatitis.

Diane Newman: That's so true. I'm in urology now for over 35 years and maybe about 15 years ago or maybe even 10 years ago, men would come, and they go to urologist after urologist with "prostatitis" right? They get antibiotic after antibiotic until they try to find someone who would have another answer for them. I think that's, in my area in Philadelphia, it's changed a little bit. You're saying you're not a urologist, but you have practiced with urology, so you really have really gained a lot of skills.

Dr. Jeannette Potts: I'm so grateful to Andy Novick who was the chair at the Cleveland Clinic. He had a vision of training someone in a different track. In fact, I believe he and another chairman at the time thought that urology should be split into two training tiers, one which would be surgically based and one that would have an office surgical base. It would then become maybe a shorter training program, so in a sense, I was his Frankenstein monster. He invented me. When he met me, he wanted a family practitioner who was procedurally oriented. I thought it was too good to be true. It was a one-year experiment, and I ended up staying on staff for 15 years.

I really owe it not only to his leadership but the entire department of urology, very, very large prestigious group of men at the time. I was the only woman for many years. They all took me under their wing. They all trained me. I mean, every procedure, every philosophy, every type of approach was taught to me by them in a very, very fraternal way. The only thing was the pelvic pain. That was the deficit so-

Diane Newman: I bet you they didn't want to deal with that, right?

Dr. Jeannette Potts: They didn't. Even, again, the kindest and most wonderful people, they just get very frustrated with it. Of course, they had big surgical practices, so it was a very wonderful niche to fill because I suddenly felt like when I started meeting more and more of the men with the pelvic pain syndrome, I started realizing this is why I went to medical school. I was a granola chick, and I wanted to be legitimized and have a medical degree to bring credibility to things that were more holistic or comprehensive. This allowed me to be a real healer. I love procedures. I love doing office based surgery, but there's something beautiful about going beyond a technician and being a healer as a whole person. In fact, in Latin America, I've lectured about being a living, breathing placebo. You know, placebo gets the-

Diane Newman: Well, listen, there is an effective placebo, right, and it usually tends to be a safe type of approach, doesn't it? Tell us a little bit about what your approach to pelvic pain would be in men. What do you kind of you start with?

Dr. Jeannette Potts: If it's the rare infectious disease, and again, that's less than 5%, and we have to remind ourselves we live in an era now where gonorrhea does not go unchecked and untreated. There's fewer stricture disease in this era. We have antibiotics that can kill just about everything and now, we have to deal with resistance. Men, for the most part, are not having tonsillar abscesses and rotten teeth and then becoming bacteremic in seeding their prostates. I mean prostatitis is extremely rare, and what is so sad is that the classification system uses prostatitis as the umbrella and then places pelvic pain …

Diane Newman: On the bottom.

Dr. Jeannette Potts: … in the bottom as one of the categories. That's 95% of the cases. That would be like one of the slides that I use is I invented an NIH encephalitis classification system, and within the realm of all the encephalitis and these life threatening infections, you put a headache. It's the same kind of thinking, so I reversed the approach. I rule out the infection. It's pretty easy. If I have a doubt, I will do a localization culture. As we know, physicians who tend to do localization cultures are very few, but they do tend instead to use other treatments outside of antibiotics.

Then, I approach the patient. It starts with just how they walk in, their gait, how they sit. We talk a lot about psychosocial issues. We talk about occupation. We talk about physical activities that might predispose them to neuromuscular etiologies for the symptoms. Did they just take up a new sport? Are they using proper shoeing? Are they taking care of themselves in other ways? Do they have a high stress job and they're sitting for very long hours?

I've also sat in my patient's cars. I'll go out to the parking lot and sit in the car because sometimes, they have a new commute, and they're sitting weirdly or they're using their clutch. I'm a car person so I love doing that, talking about sports, talking about the cars, and finding out if there are other kind of behavioral things that are affecting them.

Diane Newman: You do see many of these men are really, it's a sitting kind of issue, isn't it?

Dr. Jeannette Potts: Yes.

Diane Newman: They're in jobs for long term. They sit for most of the day or like you say, they're traveling around in a car. Somehow, that sitting triggers their pain.

Dr. Jeannette Potts: The sitting can be a factor for many reasons, mechanical compression of the tissues, and there's less blood flow there. It's shocking that you'll see young men that, when I examine them standing and they'll have two little brown spots where their sit bones are, and these are kind of the things that you see in someone who's wheelchair-bound because they're just already compressing the tissue. It's already a little bit necrotic or the skin just starts to have a chafing and a little bit of an eschar That's an easy case when it's that extreme.

Diane Newman: Yeah, right.

Dr. Jeannette Potts: You have to look. The other thing that I do is examine the torso in great detail starting with the abdominal wall. It's not just about tenderness on palpation in the left lower quadrant. It's like, well, what's on the surface, and are there trigger points that could be referring pain? There are certain patterns of pain referral that are well-known and well-recognized. As I explained to my patients many times, it's like I'm looking for the fuse box, and I'm looking for the fuse that may be affecting something far off.

That's a really important concept too, is to educate patients about the way that referred pain occurs. I reassure them it's not phantom pain or it's not something that's in their head, but that it is something that may not be in the organ in which they're perceiving it. It's important to educate and validate at the same time, but then that brings me to something that's extremely common. In 2000, I was the first person to put prostatitis, and I put that in quotation marks, in the realm of a functional somatic syndrome. 65% of just randomly selected charts that I looked at retrospectively showed that these men who were sent to me in second opinion for prostatitis met the criteria for functional somatic syndrome. Today, we call that a central sensitization syndrome.

These are folks who have a predisposition to have overlapping syndromes for which there is no true physical finding, but the symptoms are real. It's the person with irritable bowel syndrome, the person with TMJ syndrome, with chronic fatigue, non-ulcer dyspepsia, the 38-year-old patient who said, "Well, yeah, last year, I did go to the emergency room. My wife and I thought I was having a heart attack, and it turned out I was just having this pain," non-cardiac chest pain, these types of things. 

It's important to take a history to assess for all of those things. Oftentimes, it's not in the chart. Oftentimes, the patient did not receive an official diagnosis, but that type of history, "Oh, yeah, I did go to the emergency room for this." Then, you'll see things in the life span. "Yeah, when I was in law school, I had this terrific migraine problem that just kept coming and going." Maybe they weren't migraines. Maybe they were another type of headache like muscle tension. "Then, I suffered this type of issue and when I got this new job, this happened, and this happened."

Diane Newman: Yeah. It's funny you said that. I do see patients who say that, "You know, I just came into a new job or it's stressful at the job." Do you see a lot of urinary symptoms around the pelvic pain there, or what do you see in these men?

Dr. Jeannette Potts: It's about 50%. It may be even a little higher, and that scares the patients too because then, they think they're having two separate phenomenon. It's the same thing roughly with overlapping with sexual dysfunction.

Diane Newman: I'm just going to ask you, so yeah, you do see sometimes pain with orgasm, ejaculation, that type of thing.

Dr. Jeannette Potts: Yes, and the whole spectrum too. A lot of ejaculatory issues, either the inability to climax or actually new onset or secondary premature ejaculation or distress because not only could the ejaculation be painful, dysorgasmia, you have, but they also notice a change in the force of the ejaculation or the volume of the fluid. I've actually coined a phrase for that. I call it ejaculatory dyssynergia.

Diane Newman: Dyssynergia, really?

Dr. Jeannette Potts: The reason I figured that out was because just indirectly, after having some pelvic floor work done on the men in whom it's indicated, they'll comment … This is way back when I didn't know to ask about it. They'd say, "You know what, I used to think my ejaculate was all like … My semen was backing up, but after the therapy, it's like it's all back." I started realizing, "Wow, they're actually unintentionally causing themselves to have retrograde ejaculation."

Diane Newman: Is it in any way related then to any kind of pelvic floor spasm or high tone in pelvic floor because I agree with you, and I see some of that also. They don't relax at all. Something triggers that spasm. I mean again, it could be sitting all day or stress at work or whatever. It's not all the time, but it's certain things that will trigger some event or something they're doing.

Dr. Jeannette Potts: Correct. That's why I coined the phrase ejaculatory dyssynergia because my theory, and unfortunately, it's really hard to get funding and then get volunteers to have an EMG connected, but my theory is … If anyone out there wants to collaborate with me, it'd be fabulous. My theory is that we would take 10 controls and find that after they climax, that the EMG would quiet in a very predictable slope, but my theory is that in the men who are suffering from this painful or if it's immediately post-ejaculatory too, I would put them in that category, and they would have no relaxation, or it would be kind of a-

Diane Newman: Yeah. It makes sense.

Dr. Jeannette Potts: That's what I would like to prove, but-

Diane Newman: That does make sense. When you listen to their symptoms, you know there's something else going on there, and it's something that's very close to where they're ejaculating. That's, I think sometimes why they seek treatment, is they're so worried about it. I've had men that are going to get married soon. Sometimes, the stress of that, I don't know. It's such a combination of, like you say, so many associated factors.

Dr. Jeannette Potts: Yes.

Diane Newman: Where's your practice currently?

Dr. Jeannette Potts: We're located in San Jose, California, so it's a-

Diane Newman: You have men, I hear, coming from all over the country, right?

Dr. Jeannette Potts: Yes, and outside the country too.

Diane Newman: Outside also, huh?

Dr. Jeannette Potts: Yes.

Diane Newman: How did they learn about you?

Dr. Jeannette Potts: Well, I think they find me on the internet. I also think that because of the exposure I had through the Cleveland Clinic, that was also very helpful. I still have patients who come for follow-up appointments who were from the Cleveland Clinic, who actually flew in to Cleveland Clinic.

Diane Newman: What is it? Two hours in for initial visit? Then, you must spend a lot of time with patients.

Dr. Jeannette Potts: 90 minutes usually, but for people who fly in, it may be up to 120 minutes because we want to make sure that we're getting the most effective evaluation and maybe kick start the therapy. I do want to make another comment about therapy. As you know, Diane, even at the risk of my medical reputation, I was promoting physical therapy for this since the mid-'90s. I'm really delighted that it's become mainstream therapy rather than alternative therapy. Sadly, however, I think that physical therapy has become the new ciprofloxacin.

I'm now seeing patients who have spent thousands of dollars, have seen five or six physical therapists, and they have a urological problem. Not everything is myofascial pain. If a physician does not make the diagnosis either by a history that corroborates a myofascial disorder or a physical exam, it's not that hard to do the physical exam to not only make the diagnosis and then make an appropriate consultation with physical therapy, not only is that important. It's also important to get the patient to buy in, that they realize, "Oh, this is why I'm doing it." It should not be the physical therapist being the first person going in that territory. It's very off-putting especially to men.

The other thing is if they're not getting better in six weeks, they need to be referred back to that urologist or preferably to someone who really wants to make the diagnosis. Central sensitization syndrome is extremely common. Sometimes, you need tandem therapy with the physical therapy. Some patients may have myofascial disorders but need pharmacological assistance to get over the hump, but some don't need physical therapy.

Diane Newman: Well, yes, I agree with you 100%. There is a place for physical therapy and the manual therapy. What I'm seeing in Philadelphia is that they're going from primary care referred in the physical therapy and sometimes they're bypassing urology. Some of it's because urologists, I think in our field, like we've talked about, the fact, "Well, it's just a prostatitis issue," gives someone antibiotic because you're not sure what to do with that man, patient. You are so right. I am seeing actually the same thing.

Also, I'm finding is not every physical therapist really has that expertise in pelvic floor dysfunction and knows when, "Hey, no. I need to really refer you or send you back to a urologist because I'm really not sure this is the appropriate therapy." I'm glad that you brought that up because I also am seeing the same thing, and I'm hearing that from other providers.

Dr. Jeannette Potts: Yes. Again, I don't want to also be pie in the sky about it. I used to work for a big institution. I used to have a template, and yes, it may be back in the day, there was a little more time to see a patient, but my new patients were 30 minutes, 45 minutes back in those days, and you can still do a thorough examination. First, just listen to the patient, and that will guide you. You can always, six weeks later, two months later, re-evaluate the patient to either modify your diagnosis, modify the therapy, or start from scratch because you were wrong.

That's what I find so often is that the patients, they have one snapshot therapy. We need to have proper follow-up and a collaboration too. I mean, I used to love when my physical therapist would call me and say, "You know what, I'm seeing this gentleman for the second time, but I'm thinking. What do you think, Dr. Potts? Maybe we should go to an orthopedic because I think there is prostatitis going on, and I missed it." I think that it's fabulous because now, the patient hasn't had to have 12 weeks of physical therapy. I've seen patients who had 73 sessions of physical therapy, and they find me.

Diane Newman: No. You're kidding.

Dr. Jeannette Potts: I'm just like, what-

Diane Newman: No, I know.

Dr. Jeannette Potts: When would someone going to say this doesn't work?

Diane Newman: Work. I know. Yeah, but you know, and then it gets back to what you're treating is such an outlier as far as in medicine because most of the structures so far, especially in urology, is really not geared towards that type of a condition. You know that, but no one else is really doing it, and especially of course in men. I think that your service is just so really important. What you said about on the internet, I'm seeing more and more patients too who find you. I mean, really the public is getting more and more educated. Sometimes, not everything on the internet is really correct, but again, they're researching. This is really a population that searches.

Dr. Jeannette Potts: That's also a very good point. It seems to, maybe because of the same predispositions with central sensitization and such to be more aware and place a lot more energy seeking proper medical care, but then that does scare me when I think of the number of patients who may not have those resources.

Diane Newman: I'm going to have you back again to talk more about this because this is really a condition that not a lot of people understand, so I think that you, as the expert, could be so helpful. Thank you.

Dr. Jeannette Potts: I appreciate that, Diane. Thank you.