As someone who has been to Rhonda Kotarinos, Liz Rummer, and Sherese Hildenbrand, all who have dedicated their entire practices to treating pelvic pain for many many years now, I can tell you that PT has helped many pelvic pain patients either have improved quality of life, or return to normal activity. Before I go any further, the reasons I went to all 3, had to do with when I could get seen by them. I first flew to S.F to see Liz for a week, cuz it was weeks til I got in to see Rhonda. Then after several months with Rhonda, I trusted her recommendation to go see Sherese, so I would have a shorter commute. So, to continue, many patients are in severe pain due to PN, surgical scarring related to cancer surgeries, bowel surgeries, IBS, and other reasons that lead to bad connective tissue, trigger points, complex regional pain syndrome etc. I can tell you that there is both empirical data and patient data to support physical therapy. I was markedly improved after one week and I continued to improve to a point where I do have improved quality of life and data points to show improvement. 1.) improved sitting tolerance. 2) diminished urgency and frequency. 3) diminished central sensitization. I do however, have perpetuating factors that contribute to the cycle of pain. ( some are structural, and some visceral, some likely hormonal.)
I stopped PT about a year ago and next week I am returning because some of my symptoms have come back,( specifically decreased sitting tolerance and more centralized pain symptoms) and likely I will need significant maintenance PT to get me back to where I was a year ago. I stopped Pt because there was a point at which I did not continue to make progress but I was improved.
I think one of the primary frustrations for patients that are so very legitimate, is that many PT's take a week long course and then ride on that statement" I took a course, or I worked with Rhonda" and say they are a "pelvic pain specialist." And then they do a hodge podge of modalities that don't work, and they fit you in their schedule of mostly traditional PT patients.
I have known people who have moved to Chicago from Europe for example to see Rhonda Kotarinos and then spent over a year seeing her 4 hours a week, and have returned back to Europe to lead normal lives. Rhonda studied with Dr. Simons of Travell and SImons and she and unfortunately just a handful of other PT's have chosen to exclusively dedicate their careers to PT for pelvic pain patients. Just like with any disease, be it chronic pain, cancer, endocrine, nothing is curable to 100%, but I can vouch for my personal experience under these rather gifted hands, that I have felt trigger points melt away, and once when one was worked on, it never came back and that was what led to my improved sitting tolerance. I went from 0 minutes to 30 minutes. What is discouraging, is that so few PT's choose this field of work, because it is absolutely vigorous, exhausting physically and emotionally and it really takes a special person to apprentice, take the time to work with these true experts, often at their own expense. Every session that I had with Rhonda, Liz and Sherese now, I ask so many questions and I have learned so much about the pathophysiology of myofascial pain, and how localized pain syndromes can become centralized pain syndromes, and really, there is so much that we just don't know, but there is a lot that we do know.
When people ask me about PT if that is the route they choose, unfortunately there are truly only a few PT's in the world that have the skills to treat pelvic pain, hence all the rightful discouragement on the part of the patient. And the sad truth is, it's hard to get a PT interested, when hospitals won't pay for their education. All of the above PT's mentioned, took the risks to go out on their own, educate themselves, and set up private practice. None are affiliated with a hospital. Until there is true communication between the surgical specialists and PT's and much more published literature and research support, I'm afraid that many patients are left with few answers. I remain a part of this forum and Happy Pelvis, which is a PT focused forum, and by doing that, I have educated myself on a very broad approach to treating this most complex problem. I say this with humility and some expertise as an RN, and as someone who wishes they could say they are cured, but I'm not, but I've been helped by PT and in all likelihood I'll be going for many years to come. I'm grateful that I have that option, and I wish more people did.
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Cora
