Happy New Year everyone! We are excited to announce that Liz and Stephanie’s book, Pelvic Pain Explained, is on sale here!
If you are on the road to recovery from pelvic pain, or know someone who is, you need to read Pelvic Pain Explained. We wrote this book to help people with pelvic pain navigate the treatment process and restore their quality of life. We wrote this book to help pelvic floor physical therapists, doctors, and psychologists streamline their approach to diagnosing and treating pelvic pain to help medical providers help their patients, faster. In honor of the New Year, we are dedicating this week’s blog to one patient’s success story featured in Pelvic Pain Explained.
When I was 26, I woke up one day with urinary symptoms. Basically, I had a weak stream, and felt as if I wasn’t voiding completely. I also had a sensation in my urethra that’s hard to describe. It wasn’t pain, just a feeling of something being not quite right. Because the issue was urinary, I visited a urologist. The first doctor suspected either a prostate infection or a sexually transmitted disease. But all tests and cultures for either of those diagnoses came back negative. Nonetheless, the doctor diagnosed me as having “prostatitis,” which is an infection of the prostate, and prescribed a course of antibiotics.
When the medication didn’t clear up my symptoms, I made an appointment with a second urologist, with the same outcome. In the course of a year, I saw about ten urologists, each of whom gave me a different course of antibiotics for “prostatitis” despite the fact that test after test came back negative for infection. After a year of urinary symptoms, the severity of which would wax and wane, I woke up one morning in the most pain I had ever been in in my life. It felt as if someone was stabbing me in the testicle with a knife. On top of that, I was having shooting pains in my anus and abdomen. The shooting pain was so severe it literally sent me to my knees. I called two of the urologists that I had the most faith in, and both said I was having “complications of prostatitis.” At that point, I lost faith in these doctors’ opinions as well as in the diagnosis of “prostatitis”.
Desperate for relief, I began searching online for answers. I focused my search on the prostate because I had never heard of pelvic pain or the pelvic floor for that matter. In my search, I found an out-of-state doctor who was treating symptoms like mine by removing the prostate. Despite the possible side effects that come with that surgery—impotence, incontinence—I was in so much pain that I was seriously considering going that route. Eventually, the shooting pains disappeared, but I was left with constant testicular pain. Not knowing what was wrong was terrifying. Also, I had always been a very active person; very exercise conscious, but because of the pain and my fear of doing something to make it worse, I stopped working out completely. In fact, I stopped doing anything active and began to spend a lot of time either on the sofa or in bed.
Thankfully, in the course of my research, I happened upon a pelvic pain online support group, and that’s where I first learned about pelvic pain as well as pelvic floor PT. So I made an appointment with a PT on the East Coast where I lived at the time, and began treatment. PT didn’t help right away. Even though I was a super-compliant patient, it took about a year of regular PT and me being diligent with a home program for me to begin getting my life back. During that first year of PT, I lugged around a cushion everywhere I went for sitting and spent a lot of my time either on my sofa or in bed. I stopped drinking alcohol and caffeine and I wasn’t eating spicy foods because I was afraid all of these things were contributing to my pain. And because of my pain and my anxiety surrounding it, I barely did anything social or that I enjoyed. My every waking moment became completely dictated by my pain. A big turning point came when I decided that I needed to stop focusing on my symptoms and stop worrying that this would be something that I would have for the rest of my life. That realization was life changing for me. That very week I went out with friends and had a couple of drinks, and thought, “Okay, I can have a normal life here.” My mentality changed from that time forward. I found immediately that the less time I spent focusing on my pelvic pain, the better it got, and in turn the less I thought about it. I even began exercising again. I started swimming. It was an activity that allowed me to be active without flaring my symptoms.
Then about a year into my pelvic pain, I moved to Los Angeles and began treatment with Stephanie at PHRC. By that time I was about 85% better, but I still had the testicular pain. It was improved, but was still there. What Stephanie found was that I lacked the motor control to relax my pelvic floor. Without the ability to do this, pelvic floor muscles will remain tight, and become even tighter with exercise thus continuing to produce pain. The first thing she taught me to do was how to relax my pelvic floor. Also, she found unresolved trigger points in several muscles that can cause testicular pain. So that’s what we focused on in treatment. So why did my symptoms start to begin with? Stephanie’s theory is that it was a combination of factors that set off my pain. For one thing, I’m a super-active guy who’s worked out hard with various trainers over the years. Add to that a history of low back pain, and voila! Pelvic pain! After a few months of weekly PT with Stephanie, I am now pain-free. It was quite a journey! I learned a lot about myself along the way that I’ll carry with me for the rest of my life. The most beneficial lesson I learned are the benefits of relaxation and meditation. I’m not really a spiritual person, but I now get how the mind-body connection works. I now have the tools to get stress out of my life, even if it’s just for a few minutes a day. I know how to relax and be quiet, and I now understand that my mind has a huge impact on what happens with my body, and that I can work to control it. And another of the more interesting things that came out of my pelvic pain journey was learning just how common a problem it is. As soon as I began talking to others about what was happening with me, people that I knew with pelvic pain issues or knew someone who had pelvic pain issues began coming out of the woodwork, giving me a chance to share what I learned on my own journey. And basically that’s number one, you need to see a qualified pelvic floor PT, and number two; recovery isn’t going to be immediate, so you need to try your best to do whatever it takes to continue to live your life.
It is not uncommon for us to see patients that have made significant progress in physical therapy but still feel like they have that “last 20% or so” to go. This was the case with Tommy. By the time he arrived in LA, he had gone through the diagnosis process and was in the rehabilitation process: physical therapy, self treatment at home, and making temporary lifestyle modifications such as using a cushion and avoiding exercises that provoked his particular symptoms. We needed to help him get the last 20%.
It was helpful for me to know what his previously physical therapy consisted of, what his current symptoms were and what made these symptoms better and what made these symptoms worse. Tommy no longer had daily pain but he could not work out at the level he wanted to without provoking testicular pain. I knew from talking to his physical therapist back east that many of his musculoskeletal impairments had been normalized, which explained his improvement. However, something was still off and preventing him from working out without pain. I knew his preferred workouts caused pelvic floor muscle tightening and suspected that if working out causes pain it could be because he cannot relax his pelvic floor muscles after the workout. People without pelvic pain have trouble telling if their pelvic floor muscles are relaxed or tense and have trouble controlling these muscles themselves. Once someone develops pain this is even more challenging. Upon examination, my suspicion turned out to be true. He was ready for the next phase of rehabilitation so we began a program to help Tommy with motor control and we also identified a few other persisting impairments that were limiting his sitting. Our treatment plan focused on specific in office and at home treatments and after several months, Tommy was gradually able to do everything he wanted to do at the gym and he could sit comfortably without pain.
As I prepared the blog, I remembered Tommy gave us his story in late 2014. I contacted him today to see how he is doing and I am thrilled to report he is still pain free and enjoying life back in NYC. I am glad to hear it and we thank him for his contribution to the book!
To read more about the content of Pelvic Pain Explained and to order a copy click here.