Alan Wein: Hi, it's Alan Wein from UroToday. And today we have the great pleasure of interviewing Elise De. Elise is a Professor of Urology, OB-GYN and Neurology, and the Medical Director of the Multidisciplinary Service on Pelvic Health at the Albany Medical College. So she gave an interesting presentation that I heard on the surgical management of pelvic pain, and I've asked her to summarize that and speak with us a bit afterwards about just what that entails and some of the questions that it brings up. So Elise, take it away.

Elise De: Thank you, Alan. So it was a really fun workshop to do with Sijo Parekattil, Ken Peters, Brian Inaway, and Rachel Rubin on the surgical management of pelvic pain. In that workshop at the AUA, we also talked about what to do with everyone else. But today's presentation, we'll talk about genitourinary surgery for pelvic pain and a little bit about pelvic surgery in general for pelvic pain, because definitely there are a lot of interventions outside of our specialty, as well as resources such as facingpelvicpain.org, and also my YouTube channel at Facing Pelvic Pain. So the problem with treating pelvic pain is the differential diagnosis is so broad. I mean, there are dozens, if not hundreds of etiologies and contributors to pelvic pain, and often they're multifactorial, and there also can be a lot of emotional involvement in the clinic interaction. But I would say the most important thing is to get a good history from the patient and really just give them a chance to tell you the story because the diagnosis becomes clear. 70% of the time a medical diagnosis is given to you by the history and the rest of what you do is really just to confirm that.

So for example, if the patient is talking about recurrent urinary tract infections, pain with intercourse, maybe some malodorous discharge in the underwear, you should be thinking about urethral diverticulum and post-void dribbling is a big clue there. And of course, intervention is surgical for this diagnosis. When patients have had interstitial cystitis, which is not responding to initial therapies, it's important to consider investigating further with cystoscopy, you may find a Hunner lesion or you may find something that has nothing to do with IC. We have talked in the past about cystectomy for interstitial cystitis and when to do cystectomy. And Brian [inaudible 00:02:41] gave a great presentation on this. In summary, basically the good prognostic factors for removing the bladder in someone with interstitial cystitis is they really should have exhausted all other reasonable treatment options. The bladder should be an end-stage fibrotic bladder with a small capacity under anesthesia. Localizing the pain to the bladder with an anesthetic bladder installation can be really informative.

And people with Hunner lesions do better than people without Hunner lesions with cystectomy in terms of symptom improvement. I see a lot of patients with bladder neck obstruction. We have a fairly high population of patients with small-fiber neuropathy, and bladder neck obstruction can be treated with alpha-blockers, but if there's autonomic dysfunction, for example, POTS, that won't be an option. And so we do a fair amount of Botox to the bladder neck, and we have published on this over the past year. Men with bladder outlet obstruction, certainly we do not remove the prostate for pain alone, but bladder outlet obstruction can cause pelvic pain. So when your man comes in talking about pelvic pain, don't ignore the normal stuff. For example, BPH and bladder outlet obstruction. It can be really informative to be present during the urodynamics on these patients to observe whether the pain is reproduced. And Dr. Parekattil gave a wonderful presentation on scrotal content pain, and he presented on microsurgical denervation of the testis and also his algorithm overall, which we really found really useful. It's not just within our specialty.

We should pay attention to other clues in the history, for example, cyclic pelvic pain, and endometriosis has both medical and surgical interventions with our colleagues in MIS. Or for example, in colorectal surgery, a colovesical fistula could be brewing and you would be looking for pelvic pain and recurrent UTI and go down the diagnostic algorithms for patients not responding to initial therapies. We think of musculoskeletal etiologies as non-surgical, and we all feel a great deal of gratitude to our colleagues in pelvic floor physical therapy, but when that's not successful or patients have potentiators, for example, neurological reasons for high-tone pelvic floor, we can perform Botox of the pelvic floor muscles as a procedural intervention. When patients have refractory pelvic pain and positive neurological review of systems, for example, a radiculopathy or chronic-overlapping pain conditions, or if we're finding abnormal upper-motor-neuron signs on urodynamic testing, we've shown that 70% of patients in this group do have an objective neurological disease, so it's really helpful to involve our neurological colleagues.

So we've published this algorithm, and so to the right, for example, you can see if there is concern for a peripheral nervous system disorder, we're all familiar with pudendal neuralgia, and Dr. Peters presented a really interesting outcomes for pudendal nerve neuromodulation. But we also need to think outside of our field. So this pink area is the distribution of the pudendal nerve. If you have a patient coming in with pelvic pain and their nerve pain is not only in this pink area, but also along the black lines, for example, running down the leg in S2 distribution, we really should be thinking of a sacral radiculopathy, for example, a sacral chordoma or Tarlov cyst. And Rudy Schrot and Frank Feigenbaum are two experts in this nation on surgical intervention for Tarlov cysts. This is not surgical, but when you have a patient who has pain throughout the body, multiple autonomic symptoms, chronic-overlapping pain syndromes, there usually is a unifying etiology.

Sometimes it's upper motor neuron, and so a good neurological exam and evaluation with EMG can be important, but also if the exam is non-focal and if the EMG is negative, you're going to be going down the pathway of looking for a small-fiber neuropathy or other systemic causes of pain, for example, rheumatological. And so when we looked at our patients with chronic complex pelvic pain who met those criteria, two-thirds of them were biopsy-positive for small-fiber neuropathy. And of course, urologists see a lot of this because the autonomic nerves have to do with sexual function, erectile dysfunction, clitoral pain, bladder function, and of course you'll see the colorectal symptoms in addition. So there are resources for us this year, we put out AUA update series on the multidisciplinary evaluation and management of pelvic pain in women, as well as diagnosis and management of male chronic pelvic pain as a guideline.

With the International Continence Society, we're just about to launch a full 20 hours of coursework online on pelvic pain as a full curriculum. And on Facing Pelvic Pain, there's the treatment map, which is a paper document you can use to work with patients. And on the YouTube channel, we also have a lot of videos. You can just send patients directly to read about their problems and to explore. And soon I'll be launching a tool the patients can use to explore their problems and to characterize it all to bring into their physicians, and that will be on the Facing Pelvic Pain website. If you're looking for hands-on education this year, we'll have, again, the Pelvic Anatomy Expo 2026, and you can use the QR code to sign up or explore here. Course two is going to be looking more at minimally invasive surgical techniques for nerve de-entrapment and also endometriosis excision. And course three is geared more toward people who are more open surgeons or proceduralists who are looking to learn more of the interventional skills having to do with pelvic pain and also exploring the differential diagnosis across disciplines. So thank you all so much. It was really nice to be invited. I'm honored. And Alan, what else can I explore with you today?

Alan Wein: So this is obviously a really big field that most people in what I would call functional urology, for lack of a better term, really would rather not pay a lot of attention to, and yet it forms a huge bulk of the practice that you see. So what's the most common entity that you run into in men with, let's say, chronic pelvic pain? It can be anywhere between really the umbilicus and the thighs and women. I mean, what are the most common etiologies that you see?

Elise De: I would say that most often in my practice, which is more of a referral practice, we're finding neurological diagnoses, and that's why I explored that in the talk. It's varied. I mean, there's no one most common thing. We do see a lot of patients with small-fiber neuropathy, and those are the patients where there's everything wrong. And it seems not to make sense because how can you have so many different diagnoses by the age of 30? We've even found rare diagnoses such as MTHFR mutation that is impacting the way B12 and folate are metabolized. So we explore a lot of that in the patients who aren't responding to the initial urological interventions. And in that setting, we see a lot of bladder neck obstruction. And those patients, they may respond to the alpha-blockers or they may not tolerate them, and then we're moving on more to the Botox to the bladder neck.

Alan Wein: So I mean, it sounds like pretty much everyone who comes in with something that's not immediately recognizable, like a urethral diverticulum or something like that, I mean, you send for a neurological consultation and somebody that you know is sort of familiar with the problem of pelvic pain as much as a neurologist can be familiar with it.

Elise De: Yeah. So we have a combined clinic with our pain specialist who's a fellowship-trained neurologist in pain. The people who are seeing Dr. Argoff are those who have maybe a lumbosacral radiculopathy or combination of bowel, bladder, sexual symptoms, and maybe lower-extremity symptoms and referable to the lumbosacral spine or these patients with the chronic-overlapping pain syndromes and autonomic dysfunction. We've found patients with multiple sclerosis after abnormal upper-motor-neuron urodynamics, it runs the gamut. But of course we see the normal urological diagnoses as well, the Hunner lesions, the pelvic floor dysfunction, the bladder outlet obstruction in men, a lot of ergonomic issues really depend heavily on the pelvic floor physical therapist. We had a school bus driver who had pudendal neuropathy because of the way her ischium was sort of grinding against the seat. That's a pretty physical job opening that door over and over again all day. And I would just bring it back to most of the time we're getting it from the history.

Alan Wein: What's your experience with physiotherapy for, let's say, women who you think have a hypertonic pelvic floor, you really can't identify anything else. Do you find someone in your community that's particularly well-schooled and interested in this area?

Elise De: Absolutely. So when you have pelvic floor tension myalgia, the high-tone pelvic floor in association with the pain, pelvic floor physical therapists who are trained, especially certified in pelvic floor physical therapy, they almost always make some difference and often they resolve the situation completely. If your patient's coming in with pelvic pain one year after they had bunion surgery, it's a sure bet you're going to find it on exam. The way to find a pelvic floor physical therapist in your community is to go to the American Physical Therapy Association Finder, and then you can look up a physical therapist by the training. So there may be orthopedic training, pelvic floor certifications, et cetera. It's a really great resource.

Alan Wein: Yeah. What's the name of that group again?

Elise De: American Physical Therapy Association. And by correlate, I would also say that Psychology Today is a fabulous place for people to find a chronic-pain therapist. So you can search by your zip code, by the fact that you have chronic pain, and then you can look up the photos and the information that the therapist is putting out there about themselves, as well as health insurance, what health insurance they take.

Alan Wein: So let's just take somebody who's suspected of having IC. What's your initial workup for these patients? In other words, you see them, you think, well, they may have IC. Do you use cystoscope and hydrodistend everyone or cystoscope everyone initially to see whether they have a Hunner ulcer or not?

Elise De: No, I don't. I would say that I go pretty well by the AUA guidelines. It's really important to... I pre-document all of my patients, so I get every single detail about them before they walk in the door, and it comes to me in a very nicely formatted history and physical, including everything they've ever tried before. So if they've tried everything and they've never had a cystoscopy, yes, I'm going to do a cystoscopy. But if they really have never been to pelvic floor physical therapy, they've never had a voiding diary, they sit all day, then I'm going to be starting with the more conservative management for IC. But once the diagnosis is called into question, once you're hearing clues that have to do with something more than just IC, then you apply the diagnostics appropriately.

Alan Wein: How does one find in a community someone like yourself who deals, not exclusively, but who obviously has a large interest in and facility in managing these sorts of patients? In other words, someone who practices mostly lower urinary tract-directed functional urology and they have pelvic pain, how does one find someone like you to send these patients to where basically they'll be getting the most out of their visit in order to relieve whatever they have?

Elise De: I think a lot of societies maintain lists of providers in the community. So I've tried to archive a lot of those links on the Facing Pelvic Pain website for people to explore. An example would be the IC Network. Jill Osborne is really fastidious about keeping lists of providers who will see interstitial cystitis, painful bladder syndrome, for example. But also I'm finding ChatGPT and other search engines to be a growing resource for patients. They can type in, "I have X, Y, and Z symptoms and I live here and this is my insurance and who can see me." Now, it's not always accurate, but it's a better starting place than Google.

Alan Wein: Interesting. But I didn't realize that they had that level of sophistication with their medical knowledge at this point to actually give you some names of some people that might be helpful.

Elise De: Yeah. And if I have a... And that's part of what I'm going to be building into the tool on facingpelvicpain.org. If I have a patient who I suspect might have a neurological problem, including small-fiber neuropathy, if I send a patient to a neurologist and they have a normal physical exam, that physical exam's only looking for large-fiber neuropathy like a herniated disc, interrupting the upper motor neurons or multiple sclerosis, for example. Abnormal reflexes are only testing for large-fiber neuropathy. So if I have a patient who's calling me from another state or a remote from where I am and I want to help triage their care, I'll Google neurologist, small-fiber neuropathy, and then I can find someone who sees that according to the information they've put out online, and I'll send to that person.

Alan Wein: Right. So your website again for people that might be interested in gaining even more and sophisticated information about this?

Elise De: Yeah, sure. It's www.facingpelvicpain.org, and there's also a YouTube channel, which is @facingpelvicpain. And I try to put out as much content as I have the time to put out and I'll continue putting out more, and hopefully we'll have that tool up for patients self-help soon.

Alan Wein: So it's basically facingpelvicpain.org.

Elise De: Yes, thank you.

Alan Wein: Well, listen, thank you so much. A difficult topic. I'm very happy there are people like you around who are experts in it and manage it so well.

Elise De: Thank you so much, Alan. So great to see you.

Alan Wein: Great to see you as well.