In February, I attended the San Diego Pain Summit and enjoyed presentations on pain from the point of view of neurologists, physical therapists, occupational therapists, and massage therapists from around the world. At that meeting, Sandy Hilton, DPT, gave a presentation called “Practical Pain Science in the Clinic,” in which she used her work with women living with chronic pelvic pain (CPP) to elucidate her approach to chronic pain patients in general. I was inspired by her talk, and decided to use the topic as a Pathology Perspectives piece, adding my massage therapy/pathology filter. I was honored to have some follow-up time with Hilton, who provided many of the quotes used throughout this article.
Chronic Pelvic Pain in Women: What is It?
Imagine for a minute what it might mean to live with episodes of breathtaking pain from low in the abdomen or the pelvic floor that may occur at any time, without warning. Sometimes the pain comes while doing some terribly irritating activity like sitting, walking, or standing, and sexual activity is so painful that even thinking about it causes spasms. This problem interferes with every aspect of living—from using the toilet to dancing with a loved one. And it is hard to imagine ever feeling well; in the words of Hilton, “Fear sucks all the hope right out.”
CPP is an inconsistently defined, poorly understood—and therefore often inadequately managed—condition that can affect both men and women. Contributing factors may vary according to gender, but this article will focus on the condition specifically in the context of women.
CPP is identified when a woman experiences nonmenstrual pain for a minimum of three months. The pain is localized to the pelvis, and it is severe enough to interfere with activities of daily living. CPP can range from being occasionally annoying to completely debilitating. And because it is usually the result of many contributing factors, no single treatment option appears to be effective for most patients.
About one in every seven women will experience CPP at some point. It is estimated that this condition affects up to 39 percent of women in their reproductive years, especially ages 26–30. About 10 percent of all referrals from primary physicians to gynecologists are for CPP patients, and CPP is estimated to cost our health-care system almost $900 million each year.
What It is Not
The diagnosis of CPP doesn’t convey a great deal of information. It establishes that a woman has pain that appears to originate in the pelvis or pelvic floor and that isn’t related to menstrual issues or to other organ-related problems. This rules out the possibility that uterine fibroids, ovarian cysts, lesions in the colon, and any kind of infection, tumor, or cancer might be causing the pain. Obviously, to achieve this diagnosis requires extensive, invasive, and expensive testing that includes manual pelvic exams, cystoscopies to examine the bladder, and pelvic laparoscopy—all to find nothing wrong.
It is important to point out that any combination of these pathologies may have been a problem for a person in the past, but in a diagnosis of CPP, it is understood that these issues have essentially been resolved, while pain persists or even gets progressively worse.
What It Might Be
Contributing factors or precipitators for CPP may include any number of hard-to-define issues, including myofascial trigger points in the abdominal wall or levator ani muscle, irritated nerve endings (pudendal neuralgia), painful bladder syndrome, irritable bowel syndrome, pelvic congestion syndrome (a condition with varicose veins near the ovaries), postsurgical scarring, and a history of sexual and/or physical abuse. None of these are simple to diagnose, and they seldom appear by themselves; more often, they present in combinations.
Common Complications
Given the challenges inherent in living with this difficult condition, it is not surprising that many women with CPP also live with some combination of anxiety and depression. These mood disorders can exacerbate physical symptoms, and they can promote behaviors and health-care choices that interfere with effective treatment. Pain-promoting behaviors, like eating poorly, limiting movement, and isolating oneself from a support system, can perpetuate the problems. Hilton observes, “A person can feel completely betrayed by her own body. You do all the things people tell you to do, and it still hurts.”
It is common for women with CPP to struggle to hold on to a job, maintain a relationship, or feel like they can be vital, contributing members of society.
The Problem of Pain
The study of the science of pain is undergoing some exciting transitions that have major implications for manual therapists, but this article will not attempt to reteach everything we know about this phenomenon. However, here are a few issues that are worth reviewing, particularly in the context of CPP:
• Pain is a protective reaction to the perception of threat, and, in this, it serves a valuable purpose. The pain we perceive when we damage tissues is an appropriate defensive response to tissue damage and a risk of further injury. Understanding this doesn’t make pain disappear, but it does allow us to attach meaning to our experience.
• Pain is not fair. It is a product of several factors: tissue damage, perceived threat, our level of arousal, our social context, personal history, and many other considerations. It can occur without identifiable tissue damage, or it can outlive recovery so that even where tissue has healed, the pain persists. Most of us experience occasional abnormal impulse generation, but for some people this becomes a chronic, self-sustaining pattern.
• Pain can make pain worse. People who live with pain may go through changes in their nervous systems that allow more pain signals to be transmitted, while the neurotransmitters that would normally filter some of that out are suppressed. Furthermore, pain is exacerbated when we feel threatened; safety is paramount. No therapy or exercise that feels unsafe is likely to be successful.
• The traditional strategy for tracking progress in pain treatment is as a measure of severity: we look for the treatments that make pain less severe. This approach is shortsighted and problematic because the most effective way to reduce pain severity is through opioid drugs—and this leads to a host of other problems. Clearly, severity alone is not an adequate way to track progress with pain management.
• Pain can be managed. One of the most important strategies in dealing with chronic pain is to help someone learn that “her pain must be respected, but it need not be feared,” Hilton says. In this way, a person may not get her pain down to zero (who does, really?), but she may be able to manage it in a way that allows her the power to do the things she needs and wants to do. In other words, it comes back to patient-centered care and that key question: “What does better mean to you?”
What Works for CPP?
Because CPP is a multifactorial condition, it requires a multifactorial approach to achieve a satisfactory outcome. Women with this condition may consult a wide range of specialists, including gynecologists, urologists, surgeons, psychotherapists, physical and occupational therapists, and others, including massage therapists.
The first priority is to rule out any peripheral causes of pain. This includes fairly obvious things like postsurgical adhesions or colorectal lesions, but it may also include issues that are subtler, like hidden deposits of endometriosis, or lumbar disc pressure that irritates local nerves.
Once other medical problems have been ruled out or addressed, among the most important questions to ask a person with CPP are “What makes it worse?” and “What makes it better?” Even more pertinent to ask: “What does better mean to you?” In other words, “What do you want to be able to do? What does a successful outcome look like for you?” The answers vary greatly from one woman to another, depending on her priorities. This information is critical to design a treatment program that is patient-centered and likely to be successful.
Research shows that when patients have a sense of autonomy—a belief in their personal power and choice about their options—their outcomes are improved. Health-care providers can use this phenomenon by educating patients about their pain, with the understanding that while progress toward improvement may not be a smooth curve, recovery is possible. In Hilton’s words, therapy is built on “extreme hope, based on reality.”
Using education and mutual goal-setting to establish a sense of autonomy can allow the careful introduction of various therapies, including ultrasound, stretching, manipulation, hydrotherapy, and exercises to address symptoms. The patient is encouraged to identify her own functional goals, and her therapist creates strategies to work toward them in incremental steps. Any pain that is elicited in this process must be within the patient’s tolerance level, so that her sense of safety and control is not challenged.
Ultimately, the goal for CPP treatment is for the woman to achieve a level of function that meets her priorities, and for her to be able to continue to independently maintain and improve her function. “If it takes me for them to be successful, then I have not been successful,” Hilton says.
What Does This Mean for Massage Therapists?
A person with CPP may pursue treatment in a lot of different directions. Occupational therapists, physical therapists, psychotherapists, gynecologists, and surgeons all have contributions to treat this complicated condition. But massage therapists may have advantages that some of these other providers do not. We have time to listen compassionately, and to offer accurate and hopeful messages about self-empowerment and improvement—often in a way that amplifies the interventions of other providers. We also have the privilege of being able to provide a perception of luxury and indulgence that accompanies our clinical skill. This allows our clients to feel they are being rewarded at the same time that they are doing the hard work of taking control of a difficult situation.
In a nutshell, the best interfaces between massage therapy and CPP may boil down to these key points:
1. CPP is a common disorder that is not well understood. This multifactorial condition compromises the quality of life for millions of women. Its treatment options are complex, interdisciplinary, and often unsatisfactory.
2. Treatment strategies for CPP can include various forms of manual therapies. Visceral manipulation that focuses on the pelvic organs may be one approach, but more general massage that promotes a pain-free focus on the abdomen and pelvis may help a client experience her body as a beloved and interwoven whole.
3. Many CPP patients struggle with other conditions that may exacerbate their situation. Depression and/or anxiety can make the burden of pelvic pain even worse. Interventions that promote a sense of power and autonomy, that preserve a sense of safety, and that impart a sense of hopefulness for continued improvement appear to have the best promise for long-term improvement for this complicated problem.
Massage therapists are uniquely capable of creating settings that promote these important qualities. We invite our clients into our beautiful, clean, quiet, welcoming space. We can provide accurate information that allows them the power to take some control of their situation. We can remind them they are not permanently broken. We can offer them the opportunity to design the session they need most. And we can show them that they can make progress toward what better really means to them.
Ruth Werner, BCTMB, is a former massage therapist, a writer, and an NCBTMB-approved provider of continuing education. She wrote A Massage Therapist’s Guide to Pathology (Lippincott Williams & Wilkins, 2016), now in its sixth edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com.