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.

Over the course of many months of PT though we couldn’t pinpoint what started the pain, we knew my nervous system was keeping it going. Sensory signals had somehow been rerouted through pain centers in the delicate and complicated highway interstate of the nervous system. It was as if the Fed Ex truck that was supposed to carry a package from Miami to Denver got rerouted to New York, stuck in traffic in Manhattan, flipped off by cab drivers, beaten up by gang members, contents of the truck shaken up by the driver trying to flee the city, and then finally finding the way out of New York to the true destination of Denver – with damaged goods, and shaking with anxiety. As to who the idiot dispatcher was who re-routed the truck to New York, well, he’s really good at keeping himself secret and innocent-looking. Jerk!

Physical therapy, over time, began to work for me. It released trigger points which are the first step in the long process of recovery. As we know, chronic tension must be addressed in tissues and nerves, and the mind must relearn how to remain in neutral. I found that as I gained periods of relief I could see that there truly was a mind-body connection beyond what I could imagine. My physical therapist and I both knew that nerves are the slowest recovering tissue in the body, and when you combine that with an anxious mind, you have a complicated puzzle to solve. There is definitely a closed circuit that develops with chronic pelvic pain. Pain causes anxiety, anxiety causes pain and circularly they feed one another.

During my physical therapy I joined a male pelvic pain message board online. I began understanding that most men who develop pelvic pain also have experienced traumatic emotional stress. And a large part of chronic pelvic pain is rooted in a mind-body dysfunction. I had to learn how to stop thinking catastrophically, especially during flare ups. I had to trust that my body would heal and think positively. I had to learn how to relax, take care of myself, eat well, stretch and exercise daily.

When I started physical therapy, I hoped to escape the pain. My first 5 month phase of physical therapy helped to loosen the chronically tightened pelvic sphincter muscles. However, I still had allodynia. In my second phase of physical therapy I began experiencing reduction of pain for a longer duration of time. After about a year of therapy, I finally got to a point where I could see there was significant improvement, even though some intermittent pain and anxious symptoms stubbornly persisted. In late spring of 2017, I finally felt like I had conquered the pain by 98%. Occasionally flares would still come, but they were brief and nothing like before physical therapy.

How has your experience with chronic pelvic pain changed you?

CPPS has profoundly changed me. I don’t take the little things for granted or sweat them anymore. I am grateful for not feeling that horrible, hellish sensation any longer. I appreciate having my mind pain and panic free. I speak my mind while respecting my own desires instead of belittling them. I am currently in school to become a Physical Therapy Assistant as through this process I learned that I’m actually much smarter than my middle school guidance counselor thought. I understand the mind is incredibly powerful, and fear rarely has the same power over me.

How do you handle flare ups?

I now handle brief flare ups with deep breaths, meditation, and/or just taking a step back and trying to zero in on what is really bothering me. At least now I can clearly think without debilitating pain and am able to function.

What would you like to say to other people who are struggling with chronic pelvic pain?

Oh, man. For the initial duration, I would say find a safe place where you can feel as comfortable as possible until the pain lessens. When it is bad, you sort of have to give in to it. However, part of this recovery is the physical mechanics of muscle and fascia. Physical Therapy is essential in the process of recovery to release this tension. I would tell them not to give up hope. You will not find many health professionals or websites that will tell you that you can beat this and recover 100%. But I will tell you, you can recover, 100%. You can. But for now, your full-time job is to work on recovery, and that includes lots of self-care, facing possible emotional pain, and physical therapy.

If you would like to learn more about addressing the mind body connection with patients please join us for Holistic Intervention and Meditation: Boundaries, Self-Care and Dialog in January. We will be exploring ways to help our patients heal to their fullest potential as well as keeping ourselves emotionally healthy in the process. Treating patients with persistent pain can be challenging for the best of us. Please come for this three-day course where you will leave feeling refreshed, renewed and reinvigorated to treat even your most complex patient.

Additional resources:
https://www.tamethebeast.org/#home
https://www.youtube.com/watch?v=jIsF8CXouk8
http://www.sciencedirect.com/science/article/pii/S1356689X11000737
http://www.noigroup.com/en/Home
https://bodyinmind.org/who-are-we/

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.

3.  What were your thoughts when your doctor suggested physical therapy?
When the doctor suggested pelvic floor physical therapy, I was a little skeptical because I was still convinced that something was wrong in a chemical or infectious way (as is typical for most men with pelvic floor dysfunction).  However, desperate to take away the constant pain, I followed the advice.

Stay tuned for part two of our conversation with Ben, coming up in our next post on the Pelvic Rehab Report!

Speaking with a runner friend the other day, I mentioned I was writing a blog on yoga for pelvic pain. She had the same reaction many runners do, stating she has doesn’t care for yoga, she never feels like she is tight, and she would hate being in one position for so long. Ironically, neither of us has taken a yoga class, so any preconceived ideas about it are null and void. I told her yoga is being researched for beneficial health effects, and one day we just might find ourselves in a class together!

Saxena et al.²⁰¹⁷ published a study on the effects of yoga on pain and quality of life in women with chronic pelvic pain.  The randomized case controlled study involved 60 female patients, ages 18-45, who presented with chronic pelvic pain. They were randomly divided into two groups of 30 women. Group I received 8 weeks of treatment only with nonsteroidal anti-inflammatory medication (NSAIDS). Group II received 1 hour, 5 days per week, for 8 weeks of yoga therapy (asanas, pranayama, and relaxation) in addition to NSAIDS (as needed). Table 1 in the article outlines the exact protocol of yoga in which Group II participated. The subjects were assessed pre- and post-treatment with pain scores via visual analog scale score and quality of life with the World Health Organization quality of life-BREF questionnaire. In the final analysis, Group II showed a statistically significant positive difference pre and post treatment as well as in comparison to Group I in both categories. The authors concluded yoga to be an effective adjunct therapy for patients with chronic pelvic pain and an effective option over NSAIDS for pain.

In the Pain Medicine journal, Huang et al.²⁰¹⁷ presented a single-arm trial attempting to study the effects of a group-based therapeutic yoga program for women with chronic pelvic pain (CPP), focusing on severity of pain, sexual function, and overall well-being. The comprehensive program was created by a group of women’s health researchers, gynecological and obstetrical medical practitioners, yoga consultants, and integrative medicine clinicians. Sixteen women with severe pelvic pain of at least 6 months’ duration were recruited. The group yoga classes focused on lyengar-based techniques, and the subjects participated in group classes twice a week and home practice 1 hour per week for 6 weeks. The Impact of Pelvic Pain (IPP) questionnaire assessed how the participants’ pain affected their daily life activities, emotional well-being, and sexual function. Sexual Health Outcomes in Women Questionairre (SHOW-Q) offered insight to sexual function. Daily logs recorded the women’s self-rated pelvic pain severity. The results showed the average pain severity improved 32% after the 6 weeks, and IPP scores improved for daily living (from 1.8 to 0.9), emotional well-being (from 1.7 to 0.9), and sexual function (from 1.9 to 1.0). The SHOW-Q "pelvic problem interference" scale also improved from 53 to 23. The multidisciplinary panel concluded they found preliminary evidence that teaching yoga to women with CPP is feasible for pain management and improvement of quality of life and sexual function.

Whatever treatment we provide for our patients, we need to consider the individual and their often biased opinions or perceptions. Providing research and educating each patient on the efficacy behind the proposed therapy will likely impact their outcome. The Yoga for Pelvic Pain course can enhance a clinician’s understanding and allow them to better implement a potentially life-changing therapy for their clients.

Saxena, R., Gupta, M., Shankar, N., Jain, S., & Saxena, A. (2017). Effects of yogic intervention on pain scores and quality of life in females with chronic pelvic pain. International Journal of Yoga, 10(1), 9–15. http://doi.org/10.4103/0973-6131.186155
Huang, AJ, Rowen, TS, Abercrombie, P, Subak, LL, Schembri, M, Plaut, T, & Chao, MT. (2017). Development and Feasibility of a Group-Based Therapeutic Yoga Program for Women with Chronic Pelvic Pain. Pain Medicine. http://doi.org/10.1093/pm/pnw306

Assuring patients with chronic pain they are not crazy by explaining the neurophysiology behind what is happening in their brain and body can be life changing. Increasing our patients’ knowledge about physical conditions can reduce anxiety and provide hope. As a healthcare provider, being confident in your differential diagnosis skills can help narrow down the physical source of pain, weed out the psychological components, and connect the dots to the neurological influence on the patient’s persistent symptoms.

A 2015 article in Pain Medicine (Gurian et al) found a direct association between pain sensitivity and treatment of chronic pelvic pain. The study involved 58 women with at least 6 months of pelvic pain, and they were evaluated on pain threshold using transcutaneous electrical nerve stimulation before treatment and 6 months after a multidisciplinary approach to treatment of the pelvic pain. Pain intensity was also evaluated using the visual analog scale and the McGill questionnaire. Depending on the specific condition, treatment included manual therapy, physical therapy, pain medications, laparoscopy, oral contraceptives, nutrition intervention, or psychological support. After receiving treatment for 6 months, the pain threshold mean improved from 14.2 to 17.4. The effect sizes of 0.86 in the group with pain reduction and 0.53 in the group not achieving pain reduction were both within the 95% confidence interval. The authors concluded in this study that central sensitization does occur in patients with chronic pelvic pain, and treatment can reduce the general pain sensitivity of the patient.

Kutch et al., (2015) performed a study regarding the change in men’s resting state of neuromotor connectivity as affected by chronic prostatitis or chronic pelvic pain syndrome (CP/CPPS), showing men are also subject to central sensitization. Fifty-five men (28 males with pelvic pain for at least 3 months and 27 healthy males) completed the study, with resting state functional magnetic resonance imaging detecting the functional connectivity of the pelvis with the motor cortex (pelvic-motor). The right posterior insula and pelvic-motor functional connectivity was found to be significantly different in men with chronic pelvic pain and prostatitis versus the healthy control group. Contraction of the pelvic floor corresponded with activation of the medial aspect of the motor cortex, while the left motor cortex was more associated with contraction of the right hand. The authors concluded this relationship may explain the viscerosensory and motor processing changes that occur in men with CP/CPPS and could be the most important marker of brain function alteration in this group of patients.

As more research is being done on the neurophysiological level of pain, more truth can support the “it’s all in your head” accusation. However, it is a positive light to shed for a patient. The brain is powerful and controls how pain is perceived globally. Proper treatment of a chronic pelvic floor condition, for women and men, can help reduce stress on the brain and lessen pain sensitivity and perception in our patients. Never let a patient pursue the self-perception that they are crazy. Explain central sensitization and how sometimes the brain wins in the war of “mind over matter”; however, give them hope, explaining how the proper treatment can lessen the intensity of the battle wounds.

Maria Beatriz Ferreira Gurian, Omero Benedicto Poli Neto, Julio Cesar Rosa e Silva, Antonio Alberto Nogueira, Francisco Jose Candido dos Reis. (2015). Reduction of Pain Sensitivity is Associated with the Response to Treatment in Women with Chronic Pelvic Pain. Pain Medicine. 16 (5) 849-854; DOI: 10.1111/pme.12625
Kutch, J. J., Yani, M. S., Asavasopon, S., Kirages, D. J., Rana, M., Cosand, L., … Mayer, E. A. (2015). Altered resting state neuromotor connectivity in men with chronic prostatitis/chronic pelvic pain syndrome: A MAPP: Research Network Neuroimaging Study. NeuroImage : Clinical, 8, 493–502. http://doi.org/10.1016/j.nicl.2015.05.013

A recent article titled "Pain, Catastrophizing, and Depression in Chronic Prostatitis/Chronic Pelvic Pain Syndrome" describes the variations in patient symptom report and perception of the condition. The article describes the evidence-based links between chronic pelvic pain and anxiety, depression, and stress, and highlights the important role that coping mechanisms have in reported pain and quality of life levels. One of the ways in which a provider can assist in patient perception of health or lack thereof is to provide current information about the condition, instruct the patient in pathways for healing, and provide specific care that aims to alleviate concurrent neuromusculoskeletal dysfunction.

Most pelvic rehabilitation providers will have graduated from training without being informed about chronic pelvic pain syndromes. And as most pelvic rehabilitation providers receive their pelvic health knowledge from continuing education courses, unless a therapist has attended coursework specifically about male patients, the awareness of male pelvic dysfunctions remains low. If you are interested in learning about male pelvic health issues, the Institute introduces participants to male pelvic health in the Level 2A series course. The practitioner who would like more information about male patients can attend the Male Pelvic Floor Function, Dysfunction, and Treatment course that is offered in Torrance, CA at the end of this month.

The authors in this study point out that chronic pelvic pain is not a disease, but rather is a symptom complex. Despite the persistent attempts to identify a specific pathogen as the cause of prostatitis-like pain, this article states that "…no postulated molecular mechanism explains the symptoms…" As with any other chronic pain condition, research in pain sciences tells us that behavioral tendencies such as catastrophizing is not associated with improved health. The authors utilized a psychotherapy model in developing a cognitive-behavioral symptom management approach and found significant reductions in CPP symptoms. The relevance of this information for our patient population includes having the ability to screen our patients for depression, to recognize tendencies to catastrophize, and to implement useful strategies for our patient.

What does your facility currently use as a depression screening tool? Having this information at hand when communicating with a referring provider is very helpful. Explaining the biology of the vicious cycle of emotional stress and pain responses can help a patient understand why following up on a referral to a psychologist or counselor may be helpful towards his health. Identifying catastrophizing as the patient who is hypervigilent about symptoms, ruminates about his condition, expresses an attitude of helplessness, or magnifies the threat of the perceived pain can aid in identification of the patient who needs more than a few stretches, a TENS unit, or manual therapy.

A new course offered this year by the Institute will provide excellent foundational background information as well as practical patient care techniques about emotional and psychological principles that influence chronic pain. This course, Integrating Meditation and Neuropsych Principles to Maximize Physical Therapy Interventions, is instructed by Nari Clemons, a physical therapist who excels in pelvic rehabilitation, and Shawn Sidhu, a psychiatrist with a special interest in mind body medicine. The course is offered only one time this year, in September in Illinois, so sign up early!