While my dad was visiting Michigan, we had the day to ourselves as my kids were in school. I was so excited to have quality time with my dad. Unfortunately it was pouring down rain. We decided on a leisurely brunch and then a movie. Dad chose the movie, “Wind River.” While not a movie I would normally pick, I was happy to go along. A little more than half way through…there was a horribly violent scene against a young women. I panicked, plugged my ears and closed my eyes. Unfortunately some images were burned into the back of my mind. When the movie was over, I remained seated and tears just came. My dad held me while I cried. I was able to calm down and leave the theater, but the images continued to bother me. During the next few days, I made it a priority to care for myself and allow my nervous system to process and heal.
What happened to me? I have never had any traumatic personal experience. Why did I react so strongly? I talked with my therapist about it and she suggested I might have experienced secondary traumatic stress. We know, as pelvic health therapists, we need extra time to hear the “stories” of new patients. We do our best to create a safe space for them so they can trust us and we can help them discover pathways to healing. Yet no one has taught us what we are supposed to do with the traumatic stories our patients share. How are we to cope with holding space for their pain? How do we put on a happy face as we exit the room to get the next patient?
Teaching Capstone over the last few years, Nari Clemons and I have talked with many of you who were feeling emotionally overloaded especially when treating chronic pelvic pain and trauma survivors. Some of you were experiencing job burnout, others were deciding maybe it was time for a career shift, away from the pelvis. We realized something needed to be done as our field was losing talented pelvic health therapists. We have also struggled ourselves with various aspects of our profession.
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.
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.
One of my dear patients was recently diagnosed with Ehlers-Danlos sydrome (EDS). The diagnosis brought a sense of relief for sweet Katie who for years struggled with numerous health problems and was often misunderstood and under cared for by the medical community. Katie was referred to me 2 years ago at 28 for pelvic pain, endometriosis and IC. Upon exam we also discovered a significant elimination disorder and paradoxical elimination. Katie regularly timed her elimination and was spending at times up to 2 hours trying to empty her bowels. As we worked together we uncovered bilateral hip dysplasia, left hip labral tear, ilioinguinal and pudendal neruralgia and POTS (Postural Orthostatic Hypotension Syndrome). Katie already had a history of anxiety and depression but managed well with good family and friend support. When the diagnosis of EDS came, she finally felt like she had an explanation for why her body is like it is. This brought great relief as well as the knowledge that her condition was genetic and her conditions needed to be managed as best as possible to give her the most function, but would likely never be fully resolved.
In her book "A Guide to Living with Ehler's Danlos Syndrome" Isobel Knight does a beautiful job outlining the various genetic subtypes of Ehlers Danlos but also highlighting the fact that EDS hypermobility type (Type III) does not just affect the connective tissue in the musculoskeletal sytem leading to joint instability and hypermoblity, muscle tears, dislocations, subluxations, hip dysplasia and flat feet. EDS can also affect the body's systemic collagen leading to increased risk for endometriosis, POTS, Renauds, bladder problems, fibromyalgia, headaches, restless legs, ashtma, consitpation, bloatedness, prolapse, IBS symptoms, anxiety, depression and learning difficulties. She notes that some people have only a few of these systemic symptoms while others may be more affected. Per Isobel: "it is important that all symptoms are treated seriously and not ridiculed and that the appropriate medical support is given to them when necessary."
It seems that EDS is becoming more widely recognized. As rehabilitation specialists we should be alert to problems stemming from joint hypermobility when we notice how our patients position themselves. Often legs are curled up or double crossed. Upon questioning we might find that the patient has a history of being "double jointed" or was able to do "party tricks" with their bodies. The Bighton scale is a test of joint hypermobility which we should all be familiar with. It is also important to note that a patient may have hypermobility without having EDS, and that EDS is usually associated with pain. A rheumatologist, or in Katie's case a geneticist, can help confirm a suspected EDS diagnosis.
Faculty member Jennafer Vande Vegte, MSPT, BCB-PMD, PRPC has written in to encourage us all to practice kindness and patience. A positive attitude can affect more than just your friends and family; your patients will benefit in so many ways as well!
First a little personal story. Several years ago my daughter was going through a tough time and we worked with a child psychologist. He was a wonderful man who taught my husband and I so much about how to raise a challenging kiddo. The foundation of what we needed to learn was the power of positive. People need nine (or so) positive interactions to override a negative one. Poor kid was definitely at a deficit! So if she did something that needed correcting, we were to give her a chance at a "do over" where sometimes we had to coach her to choose a better action. After she got it right, we lavished praise on our little pumpkin. And would you believe, not only did all that positiveness make a difference for her, it made a difference for her parents too!
Now back to the clinical. Just about two years ago I had the privilege of teaching with Nari Clemons. We taught PF2B together. Nari said something during one of her lectures that revolutionized my PT practice. She challenged us in lab to find three positive things about our lab partner and share those things before recognizing any deficits. How many times do we get finished with an evaluation and sit down with a patient and list all the things we found that need correction or help, perhaps drawing on our Netter images to fully illustrate the parts of their body that are broken or need fixing.
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."
Jennafer Vande Vegte, PT, BCB-PMD, PRPC is a H&W faculty member and one of the developers of the advanced Pelvic Floor Capstone course. In this guest post, she reflects on her own clinical and personal experience that informed her work on this advanced course, and her approach with patients.
Most days I feel like I am on a journey. Some days I make big strides forward, other days I might fall back. But I am always learning, and eventually I hope to grow. I think it is much the same for our patients. And also for ourselves.
My youngest daughter was diagnosed with eczema, allergies (food and others) and asthma at an early age. In my hubris I felt if I could learn all I could about what was going on in her body I could "fix" her. So began a journey that took me outside the realm of traditional medicine into holistic care. I learned so much! My daughter got a lot healthier. The rest of my family got a lot healthier. I got healthier too. And I began to recognize patients in my practice that needed more holistic care. Guess what, they got healthier too.
This post was written by Jennafer Vande Vegte, MSPT, BCB-PMD, PRPC. You can catch Jennafer teaching the Pelvic Floor Level 2B course this weekend in Columbus.
"I hate my vagina and my vagina hates me. We have a hate- hate relationship'" said my patient Sandy (name has been changed) to me after treatment. Sandy's harsh words settled between us. I understood perfectly why she might feel this way. I have been treating Sandy on and off for four years. She has had over fifteen pelvic surgeries. Her journey started with a hysterectomy and mesh implantation to treat her prolapsed bladder. She did well for several months and then her pain began. Her physician refused to believe that her pain was coming from the mesh. This pattern was repeated for several years as Sandy tried in vain to explain her pain to her medical providers. She was told her pain was all in her head and put on psych meds. Finally, five years later, Sandy found her way to an experienced urogynecologist who recognized that Sandy was having a reaction to the mesh from her prolapse surgery. It turns out that Sandy's body rejected the mesh like an allergen. Her tissues had built up fibrotic nodules to protect itself from exposure to the mesh. It has taken years and multiple operations to remove all the mesh and all the nodules. Of course then Sandy's prolapse recurred as well as her stress incontinence and she recently had surgery to try to give her some support. In PT we attempted to manage her pain, normalize her pelvic floor function, strengthen her supportive muscles and fascia. Due to years of chronic pain, her pelvic floor would spasm so completely internal work was not possible. Sandy began to also get Botox injections to her pelvic floor and pudendal nerve blocks. She uses Flexeril, Lidocaine and Valium vaginally three times a day to manage her chronic pelvic pain. She is on disability because she cannot work. Later this month Sandy will have her 16th surgery to remove a hematoma caused by her previous surgery and another nodule that we found in her left vulva. Sandy is the most complicated case of mesh complication that I have seen in my practice, however I regularly see women who have had problems with mesh that we manage through PT and also women that have had mesh removal. No one expects to have complications with their surgery and when they do it can be life altering.
In a recent review of the literature surrounding mesh complications Barski and Deng cite that over 300,000 women in the US will undergo surgical correction for stress incontinence (SUI) or pelvic organ prolapse (POP). Mesh related complications have been reported at rates of 15-25%. Mesh removal occurs at a rate of 1-2%. Mesh erosion will occur in 10% of women. There are over 30,000 cases in US courts today related to pain and disability due to mesh complications. The authors looked at mesh complication statistics from studies concerning three surgical procedures: mid urethral slings, transvaginal mesh and abdominal colposacropexy .