Overcoming my Chronic Pelvic Pain Syndrome: An Interview with a survivor (2 of 2)

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/