Recently I composed an open letter that I wanted to send to doctors, PT's and allied professionals that care for people with chronic pelvic pain. I worked on it for days and it was composed as a virtual symposium and I was the guest speaker.
As a nurse, I did my share of public speaking while working with children and families who faced chronic illnesses. So, it was fun for me to pretend I had the stage talking to a room full of people who care for us pelvic pain types. I didn't end up posting that letter or sending it out to the big group, but the exercise helped me identify the concerns I have that affect our care. I sent a different letter to a few trusted PT's. I hope to hear back from them.
Over the past four years of living with pelvic pain, I've learned a lot from fellow patients and we share similar frustrations and concerns about appropriate diagnoses and access to experts. Through these conversations and my own experiences, I'll share some of the questions that I outlined in my letter. It was primarily focused on PT.
Are there evidenced based studies available to support physical therapy for patients with PFD/PN?
Has the PT profession considered creating a certification for the treatment of pelvic pain?
What really defines a PT as a clinical expert in the treatment of pelvic pain, PFD/PN?
Is there an algorithm designed to aid in the diagnosis of chronic pelvic pain?
One that would help the primary care doctor diagnose and refer more promptly.
What efforts are being made regarding a campaign targeted at primary care physicians and OB/GYN's to aid in better diagnosis and referral of patients?
Is there an effort being made to educate pain specialists in the unique needs of the pelvic pain patient?
Is there any collaborative effort on the part of PT's to document the outcomes of therapy? For example a questionnaire at certain intervals post-discharge from PT. Perhaps at 3, 6, 9, 12 month intervals to determine outcomes, quality of life, functioning after PT. Other outcome measures such as disability claims, return to work might be evaluated as well.
I have spent a lot of time looking at the IPPS site. When I read the bios and mission statements of the doctors there, they are quite impressive. I am wondering how active they are in pursuing these goals, as some are very similar to what I have outlined above. I do want to say that I think the books that have been written thus far, the educational patient handouts, and few t.v spots (which were sensationalistic) seem to focus on pelvic pain as primarily a sexual pain issue, and they minimize or dismiss the overall lifestyle effects. In addition, they fail to address the complexity of the heterogenous patient population that develops pelvic pain.
I concluded my letter with comments from the point of view as a patient, a nurse, and what I have observed as a member on some pelvic pain forums. Generally speaking, many chronic pelvic pain patients are on their own when initial treatments fail. The care is quite fragmented and primary care doctors are uninformed about the diagnosis and treatment options. The result is often that patients end up with significant financial, physical and emotional costs.
I hope to get a useful dialogue going to improve communication between the specialties and improve our access to people with expertise. The reality right now, is that like many patients with chronic, misunderstood conditions, there is a dearth of peer reviewed studies, educational materials and access to expert practitioners. That leaves many patients running in circles like the proverbial hamster on a wheel, spending our limited resources searching for answers. This post and that letter, is a small attempt to help us get off that wheel.
Peace, Healing, Humor
❦ feed the fish
make a wish