Today we pick up on Jennafer Vande Vegte's interview with her patient, "Ben", about his experience overcoming chronic pelvic pain syndrome. Ben's quality of life improved so much that he has returned to school in order to become a PTA, with a focus on pelvic rehabilitation!
Describe your physical therapy experience. Talk about your recovery process. Include the physical, mental and emotional components. For my initial visit, my therapist questioned and assessed my pain, then explained pelvic floor dysfunction. She made sure I understood that the evaluation and treatment process involved internal rectal work. After developing the condition and months of seeing doctors who didn’t listen, finally I found a physical therapist who was actually listening to me and determined to get to the bottom of what was going on. I could tell she already knew much about the mechanics (if not the exact cause) because she had treated other patients with the same issues. I immediately sensed a difference from any other health care professional in attitude, compassion, and knowledge. Of course, how do you know for sure? Well, you don’t. But after repeated visits and excellent results, you experience the difference. An important realization while going to Physical Therapy is learning to see the mind-body connection. In the back of my mind I sensed that my pain was being perpetuated by emotional trauma. This is not an intuitive way of thinking when you are in constant high-level, 5-alarm pain. I was obsessed with finding the cause of my pain, but chronic pain is extremely elusive and complicated.
Recently my coworkers and I celebrated a male patient’s recovery from a long and difficult journey with persistent pelvic pain. “Ben’s” case had many elements of what we normally see in our patients: chronic muscle holding, restricted fascia, allodynia, hyperalgesia, castrophizing and kenisiophobia. Ben was also very upfront about how his pain impacted his emotional well-being and vice versa. His healing process taught us a lot about the biopsychosocial aspects of treating persistent pain. Along his journey we dreamed of the day we could write a blog together and help other people learn from the experience. Ben also decided to make a career change entering school to become a PTA so that he could help others in pain. Here is my interview with this brave patient.
1. Tell us about how your pain started My pain started with urethral burning. Tests showed there was no infection. In retrospect, the cause of pain could have been the beginning of tension on pudendal nerve branches from extreme stress and a series of traumatic incidents that happened within weeks of each other. They included a very embarrassing and stressful summer of unemployment, a father who had heart failure and triple bypass in the fall, and a girlfriend who gave me an ultimatum when I was too stressed to get an erection.
2. What medical tests or treatments were done?When the pain started, I first thought it was a basic urinary tract infection. I went to the med center and was prescribed an antibiotic. After 3 days without change, I went back in and although they still found no sign of infection, they prescribed an additional antibiotic. The urethral pain never stopped and seemed to get worse. Following a series of visits to numerous doctors and urologists, I repeated tests on the prostate fluid, blood tests, and more bacterial tests. No infection. My PCP also made a fairly large overture of testing me repeatedly for HIV. For five months I had a blood test every month, all came back negative. This was damaging to my psyche. For those months I was terrified my life was over. In retrospect, that doctor was out of line, I changed doctors.
Recently I had a patient referred to me for fecal incontinence. She looked so familiar to me and we realized she had seen me before, years ago, for bladder issues. She was a sweet 60 something single woman who had raised 6 kids on her own after her husband left her. We laughed as she remembered something funny I had said back then. Then we got down to business. In recent years my patient “Inez” had been diagnosed with both diabetes and Crohn’s disease. She was managing the Crohn’s very well but her sugars were much harder for her to get under control. When I asked her about her current complaints and symptoms she reported that most days her bowels were perfect. She reported one or two soft easy to pass stools per day. But when she had to leave the house for a doctor appointment, she would have explosive diarrhea. This didn’t happen if she went to the grocery store or to visit a friend. Upon further questioning she realized she was really anxious about her diabetes and her interactions with her medical provider regarding her diabetes had not been positive. She felt frustrated, scared, and powerless.
As a pelvic health PT I could have treated Inez in a variety of ways. With my initial exam I did not see any glaring musculoskeletal issues. I suggested to Inez the possibility that her nervous system was sending the wrong kind of signals to her bowels when she got anxious and that we could address this in PT. Inez agreed that she would like to try this approach. We decided that we would reevaluate after four visits to see if we needed to change the plan. Over four visits I used craniosacral therapy protocols to address nervous system upregulation and tension. I taught Inez relaxation techniques and encouraged 10 or 15 minutes of daily relaxation practice. Inez opened up about her relationship with her kids and how they tended to be takers but not givers. She would get frustrated and feel a bit used at times. We had conversations about boundaries and saying “no” and I shared some of my own experiences and struggles as well. Lastly we talked about how what we think can affect how we feel and what we do. Inez’s faith was important to her. She found a few bible verses that were meaningful to her about fear and anxiety and would repeat those during her daily relaxation time. On her fourth visit, Inez was all smiles. She brought me a jar of her homemade salsa as a graduation present. As we sat down to talk she reported to me that she saw her doctor yesterday. She had no bowel issues. And more than that, as her doctor began to talk over her she said to him, “No. Stop. You are always talking and never listening. I need you to listen to me today.” She went on to explain to him how it worried her that she was not able to control her diabetes well and she didn’t think he was doing enough to help her. Her physician did stop and listen and asked Inez, “what would you like me to do for you?” She asked for a referral to a specialist and he obliged. Inez was thrilled that she was able to manage her anxiety in a way that helped her bowels and to find the courage to confront her doctor to get the care she felt she needed.
As we grow in the knowledge of how the human body works it seems like all roads lead back to the nervous system. All of our treatments and interactions with patients affect the nervous system in one way or another. In our fast paced, stressed out world, finding ways to be intentional in addressing the nervous system can be a game changer for patients (as well as for ourselves). If this is an area you would like to grow in, please consider a new course being offered this January in Tampa, Florida. Participants taking Holistic Interventions and Meditation will experience and explore evidence-based information on strategies to address the nervous system. Topics covered include practical meditation, use of essential oils, supplements, yoga, calming and centering manual techniques and instruction in how to best dialogue with patients struggling with pain, anxiety and the effects of trauma. Nari Clemons and I hope to see you there.
Mindful eating requires slowing down and paying attention to the present moment experience of eating. Rather than mindlessly put food into your mouth and not really taste what you’re eating, you deliberately notice the appearance, smell, texture and taste of the food and pay attention to your thoughts, feelings, and physical sensations. Eating mindfully can interrupt habitual eating behaviors and promote greater self-regulation of food choices.1 Warren and colleagues conclude mindful eating has the potential to help address maladaptive eating behaviors and the difficulties many face with controlling food intake.2
Although mindful breathing, body scan and movement are the core skills I teach patients with persistent pain, I introduce mindful eating as another strategy to cultivate present moment awareness. Patients can have surprising shifts in their relationship to food and frequently comment, “If I ate more mindfully, I would enjoy my food more and eat less!”
Lucie Khadduri, PT, DPT, PRPC clinician and Adjunct Professor at the University of Puget Sound School of Physical Therapy, took my course last spring and describes her patient’s experience with mindful eating:
The first time I experienced the effects of Post-Traumatic Stress Disorder (PTSD) was when my patient dissociated during a treatment session and relived the rape that had occurred when she was ten years old. It was devastating. I didn’t know what to do. She was unresponsive to my intervention. Her eyes didn’t see me, alternating between wide-eyed, horrified panic and clenched-closed, lip biting excruciating pain. It was my late night and I was alone in the clinic. I sat helplessly next to my sweet patient hoping and praying that her torture would end quickly. When she finally stopped writhing, she slept. Deep and hard. Finally she woke up disoriented and scared. She grabbed her things and left. For me, this experience was my initiation into the world of trauma.
Approximately 5-6 % of men and 10-12% of women will suffer from PTSD at some point in their lives. Researchers believe that 10% of people exposed to trauma will go on to develop PTSD. The expression of PTSD symptoms can present differently in men and women. Men may have more externalizing disorders progressing along a scale that includes vigilance, resistance, defiance, aggression and homicidal thoughts. Women tend to present with internalizing disorders such as depression, anxiety, exaggerated startle responses, dissociation, and suicidal thoughts. The research is clear that both men and women with PTSD display changes in brain function. The mid brain (amygdala, basal ganglia and hippocampus) tends to be overactive in sounding alarm signals while the prefrontal cortex fails to turn off the mid brain when a threat is no longer present. Since the prefrontal cortex is not always functioning correctly, traditional talk therapy may not be as effective for treating PTSD. Instead, say many researchers, breath and movement exercises may help regulate brain functioning. Yoga, Tai Chi, and meditation have been shown to have a positive impact on down regulating the mid brain and improving cerebral output. As pelvic floor therapists we deal with trauma on a daily basis, whether we know it or not. Although we are not trained in psychology, understanding PTSD and equipping ourselves with tools to support our patients is imperative for both our patients and ourselves.
You might be wondering what happened after that frightful night in the clinic? My patient was determined to get better. She had a non-relaxing pelvic floor. She was a teacher and was plagued by urinary distress. She either had terrible urgency or would go for hours and not be able to empty her bladder. So we met with her therapist to learn strategies to help us to be able to work together without triggering dissociation. It was a slow road, but the three of us working together helped my patient not only reach her goals but to be able to be skillful enough to maintain her gains using a dilator for self-treatment.
My job as a pelvic floor therapist is rewarding and challenging in so many ways. I have to say that one of my favorite "job duties" is differential diagnosis. Some days I feel like a detective, hunting down and piecing together important clues that join like the pieces of a puzzle and reveal the mystery of the root of a particular patient's problem. When I can accurately pinpoint the cause of someone's pain, then I can both offer hope and plan a road to healing.
Recently a lovely young woman came into my office with the diagnosis of dyspareunia. As you may know dyspareunia means painful penetration and is somewhat akin to getting a script that says "lower back pain." As a therapist you still have to use your skills to determine the cause of the pain and develop an appropriate treatment plan.
My patient relayed that she was 6 months post partum with her first child. She was nursing. Her labor and delivery were unremarkable but she tore a bit during the delivery. She had tried to have intercourse with her husband a few times. It was painful and she thought she needed more time to heal but the pain was not changing. She was a 0 on the Marinoff scare. She was convinced that her scar was restricted. "Oh Goodie," I thought. "I love working with scars!" But I said to her, "Well, we will certainly check your scar mobility but we will also look at the nerves and muscles and skin in that area and test each as a potential pain source, while also completing a musculoskeletal assessment of the rest of you."