Comprehensive Approaches to Chronic Pelvic Pain Management

[Dr. Mark Hoffman]
Obviously it's complicated, it's complex. These patients are dealing with pain for a long time and there's just so much going on that we don't understand, or at least that most of us, I don't think have had a great experience, certainly not the level of understanding that you guys have. I agree with how you described, you have to have organized thoughts or organized thinking. It's very easy to find your way winding down a path-- These patients have lived with this pain for years, sometimes decades, and for them, it didn't happen in an organized way. It happened linearly over time, details get missed, moved around, because it's been such a traumatic event for them in so many ways.

I feel like that's one of my jobs is to organize all this stuff that they're bringing to my office and say, okay, so here's the different boxes, here's where we're going to try to put things in. Is that how you work as well? Because it seems to be like we're trying to simplify a very complex thing without oversimplifying it, but, at least this is how I work, with the intent of trying to solve it, provide treatment options to address each specific thing. Is that too simplistic a way to approach it?

[Dr. Jorge Carillo]
No, I think that to me that my advice for people who are seeing these kind of patients is to use the questionnaire, gather that information with the questionnaire, then organize it in a way in which easy for you to follow. What do I do? I try to think about system and organs. Once I gather the information, for example, my first paragraph in the history part of the charting is about the GYN part. Then the next paragraph asks about pain with the genitourinary symptoms, if they have pain with urination, when that happens and all that. Then I follow with the GI tract, if they have pain with bowel movements, a change in consistency, try to follow the ROME criteria.

Then I ask about pain with intercourse, and then I dig into that as well. Then I leave usually at the end, the pain that is not associated with any of the other things, that pain that they say, that pain is always there, it's on the right lower quadrant, the left lower quadrant, it's intermittent, it's described as stabbing, squeezing. Usually that pain is myofascial. If you ask about it, they're going to have pain, that pain will exacerbate when they get their periods, if they engage in intercourse, and they can clearly separate that pain from the usual cramps that they get from their periods. You can ask if they experience that pain with physical activity, when they exercise, when they lift, when they move, when they twist, bend, all that. What makes that pain better? They'll say usually a heating pad or a hot or applying pressure, massaging the area.

Those are cues that will lead you to think that is something musculoskeletal. Then also of course, exploring if the patient talks about burning sensation, razor blades, that's more neuropathic. That will lead you to a different line of thought. Again, when I'm writing down my notes, I like to keep it separate and at the beginning have a sense, okay, so this patient has no symptoms related with their bowel. Excellent. Just move on. Next thing. Very rarely I've seen patients that have chronic dysmenorrhea or chronic bowel symptoms or chronic bladder symptoms. Very rarely I've seen them without myofascial pain. Usually, they will have myofascial pain. I think that's one of the biggest diagnosis that we miss is that one, the musculoskeletal one.

[Dr. Mark Hoffman]
It's something that I don't think I've made a single diagnosis in residency. Then in fellowship, I think I diagnosed 100% of the patients with myofascial pain. I agree. I think the analogy I always use is if you spend the night puking because you ate some bad shrimp, the next morning your stomach hurts. It's not your stomach. It's your abdominal wall from doing a hundred sit-ups over the toilet. Now, if you did that every night for 10 days out of every month, your abdominal wall muscles would be a mess. To just ignore that, especially if that's been going on for years, is missing a huge, huge component of the pain.

It also makes it challenging, I think, when a patient has dysmenorrhea and you provide medical treatment, they come back and say, I'm not having periods, but I still have pain every day. The medicine didn't work. Hold on, hold on. That's where I think I try to simplify things and put it in different components. I think using different words to describe the same thing that you're doing with your notes section which is okay. Gynecologic, urologic, GI, musculoskeletal, and neuropathic. Those are really the big boxes for me. Are there any other big boxes that we're missing here when we're talking about, and again, these are very big, broad boxes, but generally speaking, I feel like the treatments fall-- I make those boxes almost because that's where the treatments fall, right?

[Dr. Jorge Carillo]
I think that it serves several purposes. To me, one of the biggest things that I've noticed, not only from the questionnaire but when you start breaking down that way is that the patients start seeing your thought process. They start understanding the way how you're thinking. A lot of times for them, that's an eye-opener because they'll say, with time they'll come back and for follow-ups and they'll be like, doctor, the endometriosis pain is great. I have no issues with that. the IBS pain is great, but the muscle pain is the one that I still have. I don't know-- They will develop that language, which is impressive without any kind of medical background. That's just from really educating them and allowing opening that conversation and explaining the thought process.

I think that that really helps them because it also helps them to understand why it's important to do physical therapy. At the same time as you're trying to control their periods and at the same time that you're trying to schedule a surgery to look for endometriosis and remove endometriosis lesion. At the same time that you're trying to bring down their central nervous system with CBT and other medications, so all these therapies in the end, which we'll talk a little bit more about it has to fall into a multimodal approach in the end, because that's the biggest thing with these kind of problems is that it's rarely just one. We cannot treat it with just one way. It usually doesn't work that way.

[Dr. Mark Hoffman]
I think the challenge of whether or not something's helping or not, do we add a medication that may or not be helping? I think, again, giving patients the opportunity to make that choice on their own and say I'm willing to try these things knowing that I want my pain addressed as quickly as possible versus I want to know what's going to work. I think all those things are important conversations to have with patients so I think that's great. You mentioned other specialties. You've talked about psych and others. What does your pelvic pain program look like? What other specialties do you guys work closely with and how often are you referring out of your practice?


[Dr. Jorge Carillo]
We're very lucky with the setting that we have here because everything is under the same roof. We have five of us, gynecologists and, we have our own physical therapists which are right next door, which is great because we communicate a lot. If I see a patient that I know that they're going to see, I tell them, hey, you're going to see this person, this is what I'm thinking. The same thing, if they find something with a patient that they've been trying to help and they believe that they're stuck, they'll come to us and like, hey, this patient is not doing this well, what else can we do? It's great.

We have right here also in our floor a pharmacist that is dedicated to the GYN team and that has been great because, especially when we're trying to treat patients that have sensitization, anxiety, depression, those medications usually overlap and they're very complex and then you have to deal with other medications that have other side effects. Having a pharmacist has been wonderful. We have a behavioral therapist also and a social worker who help us with our patients and, beyond that in the hospital, we have what other hospitals have. We have colorectal, we have gastroenterologists and urologists and well, we have pain medicine as well, but rarely we have to ask them for anything. We usually keep our patients here.

[Dr. Mark Hoffman]
Are they in your physical office or are these just other people that you work with?

[Dr. Jorge Carillo]
This is in the building.

[Dr. Mark Hoffman]
Is this something that you just refer to them like same day they come down or is this something you just set up appointments for a different day?

[Dr. Jorge Carillo]
We set up an appointment for a different date. Basically, what we do is when we first meet the patient, we structure the kind of care that they're going to get. The key thing that I think that makes a big difference, which is hard in the community, because in the community you have your office and again, I went through that experience. You refer them and you don't hear about from the patient until like three, four months afterwards because that makes, it's hard. It's hard to keep track of that, information and because you're not under the same roof and that's the true definition of an interdisciplinary care is when you have people under the same roof, which is very challenging to accomplish.

Then the next best thing is some multidisciplinary approach where you have multiple specialists and you do your best to try to communicate with them because again, that's the reality of the clinical environment that we have. There are other pelvic pain centers where they have a lot of specialists under the same roof, but definitely having them here makes it easier.

They make their appointments, we help them make the appointments and they go and see the specialist, but we communicate. If a patient is not doing that well, then, we bring them back and we're like, okay, so what's going on? What do we need to readdress? We might not be the specialist addressing the issue but there's someone in charge. Which is, I think the biggest part that they're missing in their care is having someone in charge because they're seeing the GI, they're seeing the GYN, they're seeing the PT, everyone is trying to do their best, but there's no connection.

[Dr. Mark Hoffman]
It's having a wheel, a cycle of referrals without having a hub. I think having that spoke, that's how I describe sort of our role in pelvic pain. It's funny you use that analogy too, because there's got to go be somebody in the middle. The patients leave and go to all the specialists, but they have to come back to somebody. Is it the primary care? Is it you, the OBGYN or the pelvic pain specialist? Who's the one who's organizing it all? Otherwise, they just go GI to colorectal, to urology, to gynecology, to pain management, to anesthesia and all those.

It's like, wait, who's organizing all this? I think that's a huge role for especially someone who specializes in pelvic pain, who can make sure it's all getting done, make sure it's all being coordinated, make sure all the treatment plans are sort of in concert with one another too. I think that's something that it does take time. Another reason why I'm going to pump up our specialty here a little bit. These are things that, without having folks who focus on pelvic pain, these patients get moved around specialty to specialty.

Having those of us who do this on a regular basis, it does take time. You're spending, it sounds like what is an immense amount of time with your reviewing of their surveys and going through such a detailed history. This is not the same as a general OBGYN practice. Not better or worse, just it's a different kind of practice. It's a different problem. It requires a different type of solution. You've talked about the overall clinic setup. You've talked about your approach, the psychosocial approach to pain. You've talked about how you organize your thoughts and your history-taking and also your management approach. We didn't get too much into the weeds, but I think we can do that probably in other multiple episodes for how we deal with musculoskeletal pain or how we deal with neuropathic pain.

Understanding all the potential different components of pelvic pain. Then lastly, the role of the doctor in this situation or the provider to help organize all that. I think that's just the organizations or the overall planning in a sense for our patients is such a crucial role in this. Because I do think hearing patients talk about how many different doctors they've seen and how many different ERs and different hospitals trying to find an answer, there's not been that one person who can just say, all right, you're home. We're going to get there. I don't have all the answers today. We'll get there. I think is something that a lot of patients that I've seen have just not had the opportunity to have.

[Dr. Jorge Carillo]
t's interesting, not interesting, it's actually sad that that's the current situation. Especially knowing that pelvic pain is as prevalent as conditions that everyone knows about, like asthma. You ask, it's funny, I talk with friends that are not in health professions and when they ask me, what do you do? I'm like, well, I specialize in pelvic pain. They're like, you do what? They have no idea. If you talk about asthma, everyone knows about asthma, everyone knows about migraines.

For a condition that is as more prevalent than those, there's very lack emphasis on the education part, at every level, not only health professionals, but even outside. That is something that really, I've made that my mission to really try to reshape that. We need to do a better job in educating about pelvic pain because it's something that we see so frequently. We know the numbers, we know the statistics, we know how often we're operating on patients that suffer from persistent pelvic pain. Sometimes those surgeries are not a good option, Again, like what they say, if you're trained to use a hammer, you see everything as a nail. You're just hammering everything.

[Dr. Mark Hoffman]
No, I think that's such a big discussion in our world, in the MIGS world. We have a group of folks who, like you, are deep into the weeds on all the different possible causes of pain, endometriosis being one of them for sure. Those on the other side, a lot of them who are phenomenal surgeons, but take a very surgical approach to managing, whether it's pelvic pain or endometriosis or both. I tend to think a little bit more like I was trained, which is that there's a lot of possible causes and usually multiple causes that are playing, around each other.

You can't just look at this really complex problem with a simple mindset. You have to really be able to organize your thoughts and look at this in a complex way. Yes, surgery is going to be part of it in many cases. When a patient's come to see you and they've had 19 surgeries, like you talked about the one you saw with Fred Howard, 10 surgeries. Is it possible that the other 10 surgeries just weren't the right surgery? Possibly or maybe. Surgery is not the answer. That's our study, the first 19 surgeries weren't successful. Maybe number 20 is not going to be the answer. Let's think about this in ways that maybe somebody hasn't thought about before. It does take a different type of approach and understanding, but education is a huge part of it.

Again, it's what you're finishing with here, but also what we started with, which is we had never been exposed to it. It was something we'd never seen before, felt like who's been keeping this from us. Ultimately the more we can educate ourselves, the more we can educate our trainees and our colleagues and our peers who are doing this, and the more we can educate our patients to help them find the solutions themselves. Because I think patients are very savvy, they're very aware of what's out there and to meet them where they are, they're the experts on them and, we try to be experts on what we're doing here.