Facing Pelvic Pain - Elise De

April 12, 2021

Elise De, MD, a urologist at Massachusetts General Hospital Department of Urology and the Center for Pelvic Floor Disorders joins Diane Newman, in this conversation on chronic pelvic pain syndrome highlighting the recent publication of “Facing Pelvic Pain: A Guide for Patients and Their Families”. Dr. De whose current research focuses on pelvic pain and voiding dysfunction highlights diagnosing and managing pelvic pain syndrome, ways to treat the symptoms, along with strategies for success for other providers and for patients in managing pelvic pain and improving quality of life.


Elise De, MD, Elise J.B. De, MD is an Associate Professor of Surgery at Harvard Medical School, a Staff Urologist at Massachusetts General Hospital (MGH) in the Department of Urology and the Center for Pelvic Floor Disorders, the Director of Urology Training for Female Pelvic Medicine and Reconstructive Surgery, and the Director of Neurourology Services for the Spaulding Rehabilitation Network. She is Chair of The Education Committee for the International Continence Society, has published scores of articles and book chapters on voiding dysfunction, pelvic reconstruction, neurogenic bladder, and pelvic pain, has edited a surgical video atlas on pelvic floor reconstruction, and delivered hundreds of presentations worldwide. Along with her colleagues, she has developed two large networks for the multidisciplinary care of pelvic pain—at Albany Pelvic Health Center and at the MGH.

Diane K. Newman, DNP FAAN BCB-PMD, Urologic Nurse Practitioner, Adjunct Professor of Urology in Surgery Research Investigator Senior, Perelman School of Medicine, University of Pennsylvania

Read the Full Video Transcript

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. Elise De. She is an Associate Professor of Surgery at Harvard Medical School, a staff Urologist at Massachusetts General Hospital in the Department of Urology, and the Center for Pelvic Floor Disorders. She is also the Director of Urology Training for female pelvic medicine and reconstructive surgery. She is the Director of neuro urology services for the Spaulding Rehabilitation Network. And I also want you to know that I have worked with her at the International Continence Society as she is the chair of the education committee and has done an excellent job of educating professionals like myself on urinary incontinence and pelvic pain. So thank you very much for being with us today, Dr. De.

Elise De: Thank you so much, Diane. I'm really happy to be here today. I'm Elise De and I am a urologist at Massachusetts General Hospital. And I've really enjoyed the resources on your site, Diane. Thank you so much. I'm really honored to be here today. Over the years, I've gained a lot of experience with pelvic pain, both through my patients and through my multidisciplinary colleagues and because it can be so difficult to treat, my goal is to give strategies for success for other providers and for patients in managing pelvic pain. Many of us think of pelvic pain as being in women. But of course, it can be in children, people with disabilities, people with musculoskeletal issues. A lot of what we read is about the syndromes, which really doesn't give us a lot to work with. So, we may have a reaction if we don't know what to do that involves more sort of offloading the blame onto the patient and not really engaging in taking care of them because we don't feel we will be successful.

But when we really look into it, there are a lot of causes of pelvic pain that can be treated. When you listen to the story and really examine the patient and continue to investigate, almost always, we find if not a cause, at least a way to treat the symptoms and improve quality of life. And of course, that can be extremely satisfying, not only for the patient but also for the provider. So, to address this difficulty, together with 45 specialists in 18 fields, Ted Stern, who runs the facing series at Mass General Hospital and I created a book written for patients, but sophisticated enough for providers to learn from.  In women, many of us are aware that endometriosis can cause pain. Surprisingly, there is a delay in diagnosis all too often. Ovarian cysts can lead to pain, pelvic organ prolapse. On the external surfaces, vulvar atrophy, vulvar sensitivities, for example, toilet paper, soap, Nonoxynol-9 on condoms. Not uncommonly, neuropathies can cause vulvar pain and this can be examined for.  And diabetic neuropathy or small fiber neuropathy, which we will talk about later can be a significant source of vulvar pain, which is frustrating to treat.

The pelvic floor muscles should always be examined and a referral for pelvic floor physical therapy should be made if they seem to be hypertonic. In men, pelvic pain is about much more than just prostatitis. Of course, prostatitis is an important entity, but we should think beyond that from bladder outlet obstruction to bladder neck obstruction in younger men, especially younger men with multiple pain syndromes throughout their body. That could be more of an indication of neuropathy. Bladder neck obstruction is not uncommon in women either. Testicular pain of course can have to do with varicocele, post-vasectomy pain, which often is more a neuropathic type of testicular pain. In men with penile pain, of course, we will look for plaques associated with Peyronie's disease, but the neuropathies can also be an important source of penile pain.  Pain with ejaculation can be associated with pelvic floor muscle dysfunction.

It's not uncommon in my practice to see a distal ureteric stone that hasn't been identified yet as a cause of pelvic pain, especially when it's acute in onset and there are unilateral symptoms. Interstitial cystitis is a variable described entity in our field. I think we are probably best at this. The American Urological Association has provided really helpful guidelines for us and our patients on IC.  Urethral diverticulum (UD) in women. Now, when we get to other fields, other paradigms for pelvic pain, it becomes a little more unfamiliar. So there is GI pain associated with IBS. Crohn's ulcerative colitis, diverticulitis, internal and external hemorrhoids, and fissures. There are a lot of very simple tools for handling these entities. Even a hernia can cause pelvic pain. One lesser considered entity is pelvic venous congestion. This can be from weak valves in the ovarian vessels, but also a Nutcracker syndrome and May-Thurner syndrome, which are probably more familiar to urologists.

Musculoskeletal pain is very common as a source of pelvic pain. And if you think about the vectors, all vectors are balanced in the pelvis. So pelvic floor dysfunction is important in both women and men. And In fact, it is present in up to 87% of chronic pelvic pain. In screening exams, it is present in 13% of women and can lead to a multitude of symptoms. It's easy to identify if the pelvic floor muscle is tenser than a relaxed CNR eminence, then this, especially when associated with pain should be considered as a trigger point, Abdominal wall scarring can lead to pain as the fascial layers can constrict the muscle and physical therapists can sometimes release this constriction. Also, injuries in the muscles inserting into the pelvis can lead to pelvic pain.  Flank pain mimicking a kidney stone can be associated with an iliopsoas spasm and pelvic floor physical therapists are experts at hands-on working internally or externally on the pelvic floor muscles as well as giving exercises at home, reestablishing proper ergonomics at workstations, and working with posture in their patients.

Sacroiliac joint dysfunction is actually easily diagnosed by the Patrick's or Faber test. Osteitis pubis can be diagnosed. It is more common in young female athletes as micro-tears of the ligaments lead to pain. And this can be diagnosed by painful isometric adductor contraction. A pelvic fracture obviously can lead to multiple reasons for pelvic pain and should be noted in the history. Pubic diastasis can occur after delivery. Physical exams should include watching the patient's gait. And then we get to the central nervous system causes of pain. This is a lecture in and of itself, but we should all be aware of Cauda Equina Syndrome, especially with rapidly progressive symptoms, but these symptoms can occur slowly with a sacral tumor or with a tethered cord (TC). Inter pelvic nerve entrapment is something that is very important for us to consider given that we do surgery within the pelvis. And if there is a timeline associated with an abdominal wall incision, we should also be considering nerve entrapment. Muscles can compress nerves if they are too tight, for example, Piriformis Syndrome and Tarlov cysts, although often thought to be asymptomatic can certainly cause pelvic pain, bladder dysfunction, and sexual dysfunction.

Fortunately, there are nice diagrams of the dermatomes that are easy to reference when the patient is describing their pain and the abdominal wall nerves also can be associated with dermatomes that can be mapped. When pain is more diffused, one thinks about peripheral neuropathy and there is rapidly emerging data about small-fiber polyneuropathy and other neuropathies that can lead to systemic pain and associated with localized pain.

These neuropathies affect the somatic nerve fibers, making the person more susceptible to pain, but also the autonomic fibers. And that is why it's not uncommon for us to see bladder dysfunction in a patient with pelvic pain and also multiple pains from syndromes, which can be very difficult to sort through during a visit. EMG and neurological testing in small fiber neuropathy will be normal because these tests assess the long nerve fibers.

Rheumatologic considerations can also lead to systemic pain and associated with pelvic pain. Pictured here is lupus. Psychological contributors are almost never causative of pelvic pain but can be an important response, natural response to public pain, or contributory, for example, PTSD, to be treated along with the pain. But it is really important not to give the impression that the provider thinks the pain is in the patient's head.

And, In fact, the EAU guidelines point out nicely that treating pain early will prevent progression to central sensitization, which can potentiate pain in the long run. We've created a tool called, the Treatment Map, which is especially useful for complex patients. This treatment map can be used to differentiate local versus systemic symptoms, and that sends us in one direction or the other for the diagnostics. It also helps the patient map out where their pain is, especially if the dermatomal patterns can be helpful and also keeping track of what treatments they've tried before and what testing has been done to make the visit easier for us and also to highlight for the person with pain, what else is out there? We've provided the treatment map on our website;  Facing Pelvic Pain, as well as other lectures and resources for both patients and providers.

Especially for a patient who is involved and willing to take charge of their care. Then, the book that we wrote together can be extremely helpful in helping your patient with co-management of their care. And many of my patients who've read the book have come back to me with helpful suggestions.

For example, going through the medication tables and identifying things that we haven't tried yet. So I'd like to thank our expert authors for teaching me so much more and also for helping to provide this resource.  Thank you.

Diane Newman: Thank you very much, Dr. Day. This was a very comprehensive overview of pelvic pain. And as you said, there are many, many possible causes and I think it really is informative for patients. I want you to talk a little bit about the book though, that you mentioned in your lecture because you know, I have gotten a copy. It is very, very informative. Tell us a little bit about the background of why you decided to do it.

Elise De: Well, I think that really, even with everything that I knew and now I know more, I felt that I really did not have enough to give to my patients in one session with a urologist. And there is so much beyond my sphere of knowledge that I didn't know that my colleagues could provide to the patient, but we couldn't do it all at once. And you really can't do in a one-hour session or a 20-minute session fully what the patient needs, especially if things are complex and multilayered in multiple compartments. So the book allows people to sort through on their own. And there are a lot of things to try at home and also to sort of navigate their own care.

Diane Newman: And you have a, really, a group of a multi-specialty type of group of individuals from a lot of different disciplines, right? Why did you decide to do that?

Elise De: Well, really pain can be caused by any of the structures contributing to the pelvis. So when the patient walks in the door and they are complaining of an ache or pressure or dyspareunia, you don't know if it's neurological, if it's gynecological, urological, GI, musculoskeletal, rheumatologic, vascular.  And there are little clues that someone who is coming from that paradigm may find, but the multiple specialties communicating together in one voice and sort of weaving together the entire differential diagnosis, you just can't even do in a multidisciplinary clinic setting the way you can in a, in a written word with diagrams.

Diane Newman: Now you said you treat both men and women. So we see men and women, with pelvic pain. Do you find there is a certain age group that is more prevalent or even, is it more men or is it more women?

Elise De: Really not at all. And I think, of course, the prevalence is higher in women.  But in men, the data I have is that 9% of men have pelvic pain. And it's more like 15% of women have had chronic pelvic pain, but men are sort of under-resourced because I think there is less research. And aside from prostatitis, we really don't think about anything else causing pelvic pain in men, the way we do in women.

Diane Newman: Yeah. You know you bring up prostatitis. I see men who have been treated with antibiotics after antibiotics. Right. We saw [inaudible 00:14:45] I think it was a prostate, but what you showed very nicely, there could be a lot of different reasons why a man may have pelvic pain.

Elise De: Yes. And you really can't discount those systemic processes, which often present with a great deal of anxiety. And so the patient kind of gets wrote off cause they overwhelm the provider. So the tools that we have are really to sort of make it less overwhelming for both the person with pain and the provider.

Diane Newman: Tell, our viewers, how can they get your book? Because I did not know about it until a few days ago when I asked you to do this recording and present pelvic pain. So it is a fairly recent publication, right?

Elise De: Yes. It's a 20, 21 publication and it can be found at www.facingpelvicpain.org.

Diane Newman: Okay. Well, thanks so much. And also they can go to Amazon maybe and find it online?

Elise De: Yes. But you won't be able to find those resources, like the treatment map and the lecturers for both patients and providers.

Diane Newman: So they have to go to your specific website as far as to find the bulk of the information, as far as what was needed.

Elise De: We are putting as much as we can there for people to really make it a useful resource.

Diane Newman: Well, thanks a lot. This is really a very great resource. You know, I'm sure that you see this too, but I see patients, men, and women who go from provider to provider with symptoms of pelvic pain and they really are not finding the right person to really help them or the right solution or really the right cost. So this is really a, to be a growing problem of a group of people that we see every day in practice.

Elise De: Thank you. And they are going from provider to provider and not resolving. I mean, I've seen patients who have had 18 laparoscopies or 12 cat scans and they not only haven't gotten what they need, but they've expended all this energy and resources without really any benefit. So if someone is going to a gynecologist and really what they have is neurological, it's really helpful to sort of bring those fields together and help sort out the path.

Diane Newman: Well, thanks a lot. And again, I appreciate you providing us with this information.

Elise De: Thanks, Diane. Nice to see you.

Diane Newman:  Nice to see you too.