Improving Outcomes in Pelvic Pain Care

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A multidisciplinary team of Massachusetts General Hospital clinicians is investigating ways to improve outcomes for people living with pelvic pain. The apex of their current projects is the release of Facing Pelvic Pain: A Guide for Patients and Their Families, co-edited by Elise De, MD, urologist with the Department of Urology, and Theodore Stern, MD, chief emeritus of the Avery D. Weisman Psychiatry Consultation Service; the book was authored by 45 experts across 18 specialties. The resource aims to educate patients and clinicians about the often-hidden causes of chronic pelvic pain.

"Many clinicians and providers know what they know—but don't know what they don't know," says Dr. Stern. "Over the last few years, it's become clear that medicine is a team sport. The more you learn the language of other disciplines, the easier the communication is and the better the warm handoffs are to other specialties. This book is an effort in cross-disciplinary collaboration, providing the foundational knowledge and language for better care and clinicians."

Obstacles to Chronic Pelvic Pain Treatment

Because many different organs and structures impact the pelvis, dozens of different pathologies can cause and contribute to pelvic pain. Its etiology can be urologic, gynecologic, gastrointestinal, musculoskeletal, neurologic, vascular or rheumatologic.

"When you take care of people with pelvic conditions, such as pelvic organ prolapse, urethral diverticulum, incontinence, constipation, neurogenic bladder or spinal cord injury, you're likely to find they have pelvic pain as well," says Dr. De. "When it gets complicated, it can feel like you're throwing a dart at the pain symptoms, which makes you feel like a bad doctor. For some doctors, it is easier to avoid treating pain. But for the patient, it's a real struggle to see a urologist for pelvic pain, have your bladder and other related areas seem okay on testing, then get sent out the door because you look fine from a urological standpoint. The pain needs to be addressed."

Patients have difficulty differentiating their symptoms due to the proximity of pelvic organs and body systems; they also have a hard time overcoming the discomfort or stigma that may accompany seeking care for pelvic pain.

"Pain in your pelvis is often closely intertwined with sexual organs, sexual function, bowel function and urinary incontinence—things that not all patients or providers feel comfortable with," says Dr. Stern. "By contrast, if a patient faces cardiac problems, most don't face any stigma about saying they have chest pain or coronary artery disease."

The Emergence of Small-fiber Polyneuropathy

Understanding the difference between local pelvic pain and pain in multiple organ systems is increasing. There are several neurologic, autoimmune and rheumatologic conditions that can lead to systemic pain. The identification of small-fiber polyneuropathy is one key aspect of this improved understanding. Small-fiber polyneuropathy is a disorder of the small autonomic nerve fibers—the fibers that control pain and organ function. It affects people of all ages and genders, and its emergence is helping providers overcome the tendency to assume unidentified pain in multiple areas throughout the body is strictly a psychological concern.

"There are lots of local and systemic processes that can contribute to the nerves having short circuits that disrupt their function. These can lead to abnormalities in touch, sensation, pressure, numbness, tingling, burning and things that are difficult to describe," says Dr. Stern. "This leads many patients and clinicians to think it's not real. But just because it may be difficult to describe, doesn't mean it is all in your head. It could be from the peripheral nerves themselves."

Small fiber polyneuropathy is common in people with systemic pain. "If it's not that, there are other explanations, such as rheumatologic disease," Dr. De says. "This can give the 39-year-old patient with multiple, confounding pain problems but a lack of physical findings—and the doctor—a diagnosis and, more importantly, a treatment approach such as use of neuropathic pain medications or identification of reversible causes."

Dr. De says that a cause, such as celiac disease, can be identified in 40% of small-fiber polyneuropathy cases. Providers can then treat or reverse many of them. But integrated care and differential diagnoses are critical.

"You don't have to be an expert in small-fiber polyneuropathy to treat your patient. You just need to know that this diagnosis exists and work across disciplines to address the aspects of how a patient presents in different care settings," she says. "For example, a patient may see a urologist for difficulty starting their urinary stream. But if the urologist does not notice that the patient is being seen for migraines, irritable bowel syndrome and burning feet, they may not concern themselves with the bigger picture of systemic pain. We believe in educating our patients, so they know how to help their providers put the pieces together to improve pelvic pain."

Integrated Care in Chronic Pelvic Pain Treatment

Multidisciplinary care has advanced care practices and improved outcomes, as has using this collaborative team approach with patients.

"Medicine used to be paternalistic; you went to the doctor and the doctor told you what was best for you and what they were going to do. Now, it's much more fraternalistic and collaborative; clinicians are learning about and practicing this new team approach," says Dr. Stern.

Communication among providers via the electronic medical record has helped facilitate this shift.

"What's wonderful about collaborating on a complex problem is you can trust and depend on your colleagues, get into a flow together and work together for—and with—the patient," Dr. De says. "In the electronic record, patients are also more in control of their information. They can better understand the illness and all the inputs coming from their different specialists. That's where multidisciplinary care can be most beneficial, when all the information is in one place."

Addressing Pelvic Pain Through Patient and Provider Education

For more than four decades, Dr. Stern has collaborated with Mass General providers in every specialty in his role as a staff member and chief of the Psychiatric Consultation Service and an educator of medical students, residents and fellows. His experiences have contributed to his and his colleagues' deep knowledge about the myriad conditions that cross disciplines.

"I realized that addressing the education of clinicians doesn't fully address everyone's needs and started to shift my efforts towards educating those in the general public who have these problems," says Dr. Stern. "That led to the genesis of what we call the Facing series, which are books that comprehensively address conditions that the World Health Organization identified as the most disabling conditions worldwide, including heart disease, diabetes, overweight and obesity. We focused on prevalent and problematic conditions that cross disciplines, that are disabling and that shorten the lives of patients."

Facing Pelvic Pain is the latest addition to the Facing series. Co-authored by a multidisciplinary team of 45 subspecialized pelvic pain experts from the U.S., Canada and Israel, its goal is to help patients and clinicians unlock the causes of pelvic pain. This understanding, simply explained, facilitates the identification of effective chronic pelvic pain treatments.

"The book provides a simplified management path for these sometimes-complicated patients. We can validate the patient's experience with the book, empower them with information and provide tools to keep track of what has and hasn't been tried," says Dr. De. "When you're listening to a history of pain, it's important to have patients tell their story—because that's where you usually find the answer. Even if the clinician has no knowledge or understanding about chronic pelvic pain, simply validating the pain will speak volumes to the patient. Providing education and getting them the right help will help them. Eventually, most patients find relief."

"This book is an opportunity to provide hope," Dr. Stern says. "This lets people know there are still lots of things for us to think about and work towards as they learn, adapt, cope and heal."

Pelvic Pain and Psychology

The involvement of psychology is a critical component of this approach because of feelings of loss and grief that often accompany pain. Trauma can augment pain issues, especially when it involves the genitalia. A history of trauma can be an obstacle to pursuing treatment for pain because of patients' concerns about the diagnostic exams. Mass General has a team of psychologists who specialize in therapeutic approaches for people with a history of chronic pain and trauma.

"This team is skilled at helping people in pain cope with loss, grief or trauma, using strategies for approaching medical treatment when there's an aversion to it," says Dr. De. "It's hard to bring it up, but it's almost unfair to offer a patient therapy for pain, especially if it's longstanding and disruptive, without addressing that coping and psychological side as well. If the clinician reinforces that the pain is real, this discussion should feel okay."

"What distinguishes Mass General from most hospital systems around the country is that psychiatry is woven into the fabric of Mass General and its multiple disciplines. The Department of Psychiatry is the [hospital's] second-largest department," says Dr. Stern. "We have clinicians and researchers—most of our staff are both—who do research with people in different medical and surgical disciplines. That's how you understand the problems better."

Dr. De and her colleagues have applied this multidisciplinary approach to pelvic pain research. Active areas include neuromodulation with spinal stimulators and the application of botulinum toxin chemo-denervation to the bladder, urethral sphincter, pelvic floor muscles, back muscles in spasm and in patients with disability, to leg muscles in spasm. Researchers are also investigating the prevention of, and more efficacious treatments for, systemic neuropathies.

"You literally cannot move forward in the treatment of a disorder like this without that multidisciplinary research," says Dr. De. "It is wonderful to work with such brilliant colleagues in pain management, urogynecology, colorectal and gastrointestinal health, physical therapy, psychology, rheumatology, neurology and other fields. Their brilliance magnifies whatever I can do to help and together we find a path. We hope that multidisciplinary care will be better recognized and that insurance reimbursement patterns will support the extra time that is taken to achieve these better outcomes. While we dream of patients being able to come to a comprehensive program under one umbrella, for now we have packaged the best we have to offer in Facing Pelvic Pain."

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