Diagnosing Chronic Pelvic Pain: A Holistic Framework

[Dr. Jorge Carillo]
That's a concept that is not new. It's an old concept and it's been applied to many things that are related to health. When it comes to pain, basically, what it tells is that it's acknowledging that pain usually, most of the times, has a biological component. There's something biological or physiologically speaking that is leading to that painful experience. The cycle and the social aspect of it are key when it comes to pain because a lot of it, of the pain experience, comes from the cognitive part and the cognition. That's something that is learned. It goes along with the behavior that the patient has or that the person has in response to a painful stimulus. That's really what makes the pain experience different among individuals.

Probably the way how I interpret pain is most likely very different compared to the way how you interpret pain because we both have different experiences of pain. That pertains to the psychological aspect, that cognitive part, the part of the behavioral part. The emotional part. We know there's a very strong association between persistent pain and anxiety and persistent pain and depression and, this other word, catastrophization as well. Again, those are cognitive processes and behavioral processes that will impact that psychological part. Then you have the social aspect of it, which also plays a very important role.

If we're in a society where pain, especially pain in women, is totally normalized, it's something that, well, you have painful periods, well, just take ibuprofen, Tylenol, and try to deal with it. Just keep going. Keep moving. Someone calls in sick because they're having very bad periods and they're afraid of doing so because they perceive that they're going to be looked at as weak so they don't speak up. In that aspect, the care is delayed. Because there's actually studies that we all know, we always talk about the delay in diagnosis and, especially with endometriosis 7 to 10 years and all that.

There's actually studies looking at why that could happen and what factors happen. There are factors that come from the patient side, the society side, and there are factors that come from the medical aspect, the health professionals aspect. The part that comes from the society part is basically normalization and lack of education, the lack of talking more about how it's not normal to experience pain with intercourse. It's not normal to have periods that are debilitating, that don't allow people to actually carry normal functions. Those studies are out there and that's information that we know.

[Dr. Mark Hoffman]
The number of people who were just told, well, this is just what it's like to have a period, sometimes it's not even intentional. Their parents, their mom might've gone through very similar things. They had endometriosis as well or had a long history of painful menstrual cycles. It wasn't until they got the hysterectomy that they felt better. There's this sort of familial or in a sense, cultural understanding of this is the way it's going to be for me. I hear that a lot. This, I know I'm going to get my hysterectomy too, because my mom and my aunts and my grandma all had theirs. It's like this is the path.

Understanding people's social and cultural backgrounds enough, just again, that's part of getting to know a patient, which in healthcare these days, as I said a minute ago, can be challenging. That relationship with these patients who are dealing with such complex chronic things, establishing that trust is huge because they've oftentimes been, I don't think it's because of doctors who didn't care or didn't try. It was that they are dealing with really complex things that haven't been managed in a way that has provided the results that these folks deserve.

Yes, I think it's clearly tough. I think it's one of the toughest things that we do, but I also think it's not something that is taught as uniformly and as consistently as some of the other things in our specialty. This is what excites me about AGL, about IPPS, about MIGS in general, is there is this huge field with endometriosis, fibroids, pelvic pain, that is not necessarily as well understood and taught over four years of residency. It's something that huge opportunity for our patients and for those of us who do this to learn more about it. When you meet a patient in clinic, you establish that rapport.

[Dr. Jorge Carillo]
For people who are interested in this, you don't have to reinvent the wheel. The IPPS is probably the most well-known one. It's a compilation of multiple validated scales that look at different aspects of pain beyond just gynecological. It's a 14-page questionnaire, and the intention of the questionnaire is to give it to the patient before the appointment so they can fill it up at their own pace, taking their time, probably having water or tea or coffee, whatever they can drink, right? Then just take their time and really reflect on their path.

With those surveys, we explore basic things about the pain, but of course, we focus on the OB and the gynecological story, but we have embedded the questionnaires like the Rome IV Criteria, the PUF Questionaire for Bladder Pain Syndrome, Nantes criteria for pudendal neuralgia, the DASS scale, which is a score looking at depression, anxiety, and stress. The PROMIS questionnaire is there. There's a pain map. There is a visual analog scores of pain, how much it impacts daily activities, things that will make the pain better or worse.

It's a very extensive and detailed questionnaire, but really the utility of those questionnaires is that it gives you a lot of information beforehand that, as I was sharing at the beginning of our talk, what Fred did when I saw him. That, he grabbed the questionnaire and he went through it in like 5, 10 minutes and read, and that by itself gave him an idea of what to dig in more when he walked into the visit and it wasn't like that open-ended question of, hi, what brings you in today? Because again, these patients have very complex histories and, they have a lot of information to unload in the visit. If you open that window, it's going to be very overwhelming for both, and the key thing about these visits, I believe, is to be able to have an organized mind.

After years of using the questionnaires, I've came up with a strategy that helps me remember what to ask that I'd been teaching that strategy, whenever I had the opportunity to talk about the topic, which is using the acronym PAPS. The first P is related to pain. Go back to medical school, ask basic things about pain, quality, quantity, referral pattern, intensity, associated factors, alleviating factors, aggravating factors, treatments done in the past and all that. That's for the pain in general.

The patients are going to walk into the office saying, it hurts here and I have pain here, but it's our job to give them words and be like, okay, so, but what kind of pain do you experience here versus is it similar to the pain that you experience when you urinate, similar to the pain that-- We have to help them tease that out. The A from that acronym stands for associated organs. Basically to me, that means starting off with a simple question, is the pain cyclical or not? As a gynecologist, probably it's very easy for us to dig in a little bit more in cyclical pain. It's more towards the GYN aspect and you ask about periods and length and heaviness and how intense they are and how dysfunctional they are and what have they done in the past surgeries, medications, if it worked, not work, all that stuff. All the GYN history that we're used to ask goes in that part.

The non-cyclical pain, again, is when you start digging a little bit more into, and this goes with remembering that pain usually affects different organs. By the way, I love that episode that you guys did on bladder pain syndrome. It was great because it touched a lot of the complexity of what visceral pain is and how complex it is. We have to deal with visceral convergence and visceral somatic convergence, which really confuses all, but basically it's a reminder that patients that have 10 years, 15 years of dysmenorrhea, very rarely are going to have just dysmenorrhea. They might have myofascial pain as well. They might have symptoms related to the bladder. They might have symptoms related to bowel. We need to ask those things and especially those common conditions that are associated with dysmenorrhea, bladder pain syndrome, IBS, myofascial pain, pudendal neuralgia, vulvodynia. That A is to remind you that there's other systems and organs that usually could lead to pulvic pain, not just reproductive. Then the P of the PAPS acronym is for psychological, psychosocial factors. Asking about depression, asking about trauma, asking about catastrophization. Nowadays, we're using different scales to measure that are very short. You can use one of those short questionnaires to gather that information.

Especially catastrophization is an important one that we rarely ask about, especially if we're about to offer procedures, it's important. As well as the last letter of the acronym, which is S, which is about sensitization. We have now more research associating endometriosis with central sensitization.